A NHM Readers experience: Encopresis (Severe constipation in young children)

This is a really heartbreaking post that a NHM Reader has asked me to share with you.

Please, please, please DO NOT tag anyone on this post in Facebook or any other social media. Thank you for your understanding.

The Mum who has sent this to me has asked that if anyone else is dealing with the same situation to please contact me, NorthHantsMum@gmail.com, and I will put you in touch with her.

The Mum has also asked me to state that she is absolutely NOT a medical person and this is just an account of her experience, not in any way meant to provide medical advice.

If you have a unique parenting experience that you would like to share with other NHM Readers, in the hope that your experience might help others, please email me your text and pictures to NorthHantsMum@gmail.com.

What is encopresis?

Encopresis is a symptom of chronic constipation. Children do not know or understand the sensation of when they need to do a poo.

Potty training

When my daughter first used the potty for a poo, when she was 18 months old, she screamed the house down. I was warned that she may have a negative reaction to it because it can be a bit of a shock to a toddler, when they no longer poo in their nappy but actually feel the poo coming away from their bodies. We thought nothing of this but continued trying to potty train our daughter.

When my daughter turned 3.5 years old I started to worry as she was still having daily poo accidents at nursery (she attended nursery 2.5 days a week). Nursery started saying that I needed to try to potty train her in earnest, despite us having tried a number of times.

Realising things weren’t “right”

With 9 months to go before my daughter started school and shortly after my daughters fourth birthday, I got the health visitor involved. She came round and gave me lots of information, particularly about the eric.org website. We had some success, for example my daughter did her first poo in the toilet just after her fourth birthday. The Health Visitor came back a month later to see if we had made some progress. We tried the marble in a jar solution and it seemed to improve things, but it didn’t last. The health visitor told us it was a developmental issue and would resolve itself eventually.

Doctors

In June 2015, three months before my daughter was due to start school, I decided to get the Doctors involved as my daughter was making no further progress with doing poo’s on the toilet and we wanted to get things resolved before she started school in September 2015. I requested a woman Doctor as I felt this was most appropriate. The Doctor questioned my daughter about her using the toilet and said she was very grown up for her age as she answered the Doctors questions far more comprehensively than expected. The Doctor then gave her a physical examination but found nothing physically wrong with her.

At the same time we were having the settling in periods at my daughters new school. I mentioned the issue that my daughter was having to the teacher, who informed me that it wouldn’t be a problem but I needed to check with the teaching assistant. I spoke to the teaching assistant who informed me (quite rudely) that if my daughter wasn’t capable of “cleaning herself up” then I or my husband would be called into school each time, to clean her ourselves as nobody at school was able to touch her because of child protection policies. (I have since found out that it was unacceptable for her to even suggest this).

At this point, our daughter refused to clean herself so I spent three agonising months worrying about whether I and/or my husband were going to be called out of work regularly to sort out daughter out. It was even suggested by another “helpful” person that we homeschool our daughter until this “issue” is resolved.

School

My daughter started school in September 2015 and we were still no further forward. She was still having daily accidents in her pants. The school were extremely unhelpful. I felt judged and the Teaching Assistant implied on a number of occasions that we hadn’t tried to potty train our daughter. It was pretty awful that my daughter would run out of school at the end of the day and the first thing she would say was how many accidents she had had that day. If my daughter didn’t come straight out and tell me, the Teaching Assistant would announce it in the playground.

In October 2015 my four year old daughter was bullied by some girls in her class. My daughter wasn’t good at telling people when she had done an accident, probably because she was embarrassed even at that age (One of the symptoms of encopresis is that you can no longer smell your own poo’s and I also think she had become immune to the smell.)

Two girls in her class started calling her “stinky”. When she came home from school that day she was very quiet. I knew something was wrong but she wouldn’t tell me. At bed time, I asked her what was wrong and she burst into tears. Proper, awful, body rocking sobbing. It was utterly heart breaking and totally gut wrenching to have my four year old in a state of complete distress that I could do nothing about. We explained gently to her that she needs to tell the teacher or teaching assistant when she’s had an accident. I completely fell apart that night after she cried herself to sleep in my arms.

The next day I spoke to the teacher about the bullying incident and she shrugged her shoulders and said that, despite them trying to ensure that no bullying happened at school, there was nothing she could do about it. Ironically the subject of anti-bullying was covered at school that week but this clearly didn’t mean anything in reality! I was furious so got straight onto the Doctors for another appointment.

I tried to get an appointment with the woman Doctor who had given my daughter her physical examination but, for whatever reason, she wasn’t available. I had done more research by this time and was utterly convinced that my daughter had encopresis. My husband and daughter came to the Doctors appointment as well. The Doctor told me that my daughter didn’t have encopresis (without even checking her over!) and that I was clearly a neurotic mother and that my daughter would learn to use the toilet in her own time. I then requested to be referred to a paediatrician (a friend had reminded me that my husband had medical insurance cover for our family and my daughter would be covered under this) and he refused to refer us to the paediatrician until after my daughter had tried two weeks of Movicol, the laxative. We tried two weeks of movicol, a low dose, and it made no difference at all.

In the meantime another friend had been to see the School nurse for a medical issue that her child was having and she mentioned the issues we were having. (I will always be extremely grateful to my friend for her help with this).  The school nurse said that I had to demand that the Doctor refer us to the paediatrician otherwise they wouldn’t do anything.

I then phoned the Doctor, again having to wait another week for a phone call appointment and had a twenty minute discussion” with the Doctor who eventually gave in and said he would give us a referral but “it wouldn’t make any difference because your daughter doesn’t have encopresis”.

I phoned the school nurse (did you know there are only 3 school nurses that cover ALL of the schools in North Hampshire?) and left a voicemail. They never called me back.

I mentioned in passing to the teacher at school that it was probably encopresis. She had never heard of it before and said there was nothing she could do until it was diagnosed by a Doctor.

By this time it was Christmas 2015. It took a week to be referred to the private paediatrician and we managed to get an appointment between Christmas and New Year. (I can’t tell you how grateful I am for private medical insurance!)

We spent 30 minutes with the paediatrician. She spent 15 minutes talking to our daughter about how she needed to use the toilet and why wasn’t she using the toilet as she wasn’t a baby. She then asked to check over our daughter’s tummy. Immediately her tone changed. She said she could feel impaction and that our daughter needed an X-ray. We had the x-ray there and then (which our daughter really enjoyed! Children! ) and were able to look immediately at the picture. The Paediatrician explained the picture and showed that our daughters bowel was so large that the impaction had expanded to under her ribs and it was one of the worst cases of encopresis that she had seen in 15 years of being a peaditrician. Our daughters lower half was literally full of poo.

All of the dark patches are poo.
All of the dark patches. including in her ribs, are poo.

She put our daughter on a hard core case of laxatives (8 sachets of movicol at one point) for two weeks. We were literally swimming in poo. It was awful but my daughter coped admirably. We cancelled all of our plans between Christmas and New Year because we needed to be at home to “sort things out”.

It was a huge relief once we had the diagnosis and I thought our troubles were over…

I phoned school to explain the situation as my daughter’s laxatives didn’t finish until the Thursday of the first week of school. I was told that because they didn’t have a shower or the facilities to clean her up, she would need to stay home. So my daughter had to have four days off school whilst the laxatives “cleared her system out”. I spoke to the head teacher who sympathised with our situation and she said she would get the school nurse engaged for our support.

We went back to see the paediatrician and talked through the different strategies that we would need to engage. Our daughter would need to sit on the toilet for 10 minutes as soon as she got up and that she needed to sit on the toilet frequently throughout the day. We needed to make it as fun as possible. Lots of games, books and toys in the toilet to keep her amused and keep it “fun”.

We tried all of these strategies but it was extremely distressing. Our daughter would scream relentlessly if we tried to get her to sit on the toilet. It took all of our negotiation skills to get her to use the toilet at all for a while.

Six weeks later I saw the head mistress and asked if she had heard back from the school nurse. She said the School nurses were very busy and as our daughter wasn’t a critical case they would get to her when they got to her.

The next day we had parents evening. We were told by the teacher that our daughter was extremely “behind” and unlikely to catch up because she had missed so much class time because of her accidents and would be failing YR. When I asked the teacher what she was doing to resolve this she responded with: “I have 29 other children to teach”.

It took about 3 hours for this to sink in and it was only when I got home and relayed the conversation back with my husband, that I got really, really angry.

School Nurse

The next morning I phoned the school nurses, managed to actually speak to someone and lost my rag. I ended up bursting into tears and ranting about how I felt that all of the institutions in my daughters life had let her down.

Within 2.5 hours I had a school nurse sitting on my sofa. It’s a huge credit to them that they responded to my call as quickly as they did.

The school nurse spent 1.5 hours with me, asking all sorts of questions about whether my daughter had meconium when she was born, what her first experience of the potty was like, what her diet was like, etc. etc. By the end of our conversation she did say that I was clearly well read on the subject and that we appeared to have tried everything. She then informed me that my daughters condition is very serious and could lead to her having a colostomy bag and not being able to have children when she got older. She also explained that my daughter needs to be considered as disabled and needs to be treated, especially by school, as disabled. I got a bit hysterical when I explained this to my husband when he got home that evening from work.

The school nurse worked through a care plan for my daughter which involves her sitting on the toilet for 5 minutes every hour. She had to drink at least 650ml’s of water a day at school because dehydration can exacerbate constipation. We were to stop her milk in class immediately and she wasn’t allowed chocolate or bananas anymore. (I was only allowed to change our daughters school meals with the permission of the school nurse and I had to list all of the meals that our daughter could no longer have).

To her credit again, the school nurse went in to see the school the following day, took lots of leaflets from the eric.org website and highlighted to them just how serious my daughters condition is. She told them that they needed a stool for my daughter in the toilet and she needed regular support at school. She also advised that they implement a book that they used to record the times she had been to the toilet and the water she had drunk so that my husband and I were informed.

It took nearly 4 weeks to get the care plan implemented in school. By this time it was March 2016. I was advised by another friend to set up regular meetings with the head teacher, to keep the school accountable. We have had a meeting with the head teacher every month for the past 6 months and they seem to be upholding their end of the bargain. However, it was eye opening to me that they could have turned my daughter and her extra care down and we would have had to move her to another school! I didn’t realise they had a choice! (I have since found out that this isn’t true: http://www.eric.org.uk/Schools/Toilet_Training)

In April 2016 the school started to invite the “Physical Inclusion Development Officer” (PIDO) to our monthly meetings. We explained that our daughter had recently started having wee accidents again as well as poo accidents. The PIDO explained that it was likely that our daughter was impacted again and would need to have another “flush”. She recommended that our daughter have at least 16 sachets of movicol over a couple of days. It was another horrific experience and we were using everything we could possibly think of to get the movicol into our daughter, including making ice pops and jelly with it. Our daughter thought it was brilliant as she had a week off school AND jelly.

We had an appointment with the private paediatrician at the end of May 2016 and she said that because we’ve tried everything and our daughter still doesn’t seem to be able to use the toilet properly, she clearly has a deep seated fear of the toilet. She referred us to a child psychologist. We had our initial meeting with the psychologist which took 1.5 hours and at the end of the meeting Dr Ana hugged me and told me that I was finally with the right person and she would help us. She needed to send a letter to the medical insurance explaining the situation so that we could have authority for them to pay for future sessions.

A week later the insurance company turned down any extra funding because our daughter’s issue was “behavioural” not medical. We never heard from the child psychologist again. We were advised that if we wanted to go through with seeing a psychologist we would need to pay £3k in fee’s. My husband and I had many long conversations about what to do and agreed that we didn’t want our child to be used as a lab rat and that we would handle things ourselves. I still stand by this.

During the summer holidays in 2016  we went to see Lily at the Life Right centre, a hypnotherapist that another friend had suggested (Another person who I am deeply indebted too).

Y1 at school

On the way to school on the first day of Y1, September 2016, I had a chat with my daughter about her being old enough to understand that she needs to use the toilet now she was 6 years old and in Y1. We had nearly a month of her using the toilet and having no accidents at school. It was awesome although I’m now convinced she was partly withholding as she would have an accident as soon as she got home. School were putting her on the rainbow for every day that she didn’t have an accident and she was so pleased with herself! :-D.

We did have to start all over again with her new Y1 teacher, but they are far more understanding and sympathetic than her old YR teacher. This has really helped as they have made more of an effort to understand and to reward our daughter when she has done well with her toilet training.

In Y1 the staff categorically won’t change her because she’s “older now”, so she has to change herself. I have very mixed emotions about this. It can take her up to 45 minutes for her to change herself so she often misses lunchtime play because she has an accident after lunch.

Then she got sick in October 2016. And everything regressed. We had half term and she categorically refused to use the toilet. We made some progress after half term at school but I know she’s just exhausted with it all now.

This week she missed her Christmas play because she had an accident just before the play and managed to get poo over her outfit because there weren’t enough people to look after her whilst she changed herself. My poor husband had to sit through the play because I got called out just before it started, to change her, and he had to watch a play with all the other children, knowing that our child was missing out on ANOTHER key milestone in her life. I spent 15 minutes sobbing in reception, being judged my the receptionists and went home in the end.

Frustration

In YR in May our daughter started lying to the teaching assistant when the TA asks her if she’d had an accident. As a result of her lying to an adult about having an accident, she was immediately put on the “thunder cloud”. This did not sit right with me. Yes, she should not be lying to an adult, but it’s not as straight forward as that. Plus, I have no idea if they humiliate her in class by explaining to the rest of the class why she is on the “thundercloud”.

I mentioned it to the school nurse and asked if I was being a neurotic mother and she said absolutely not because in this situation we should all be focusing on the positive, never the negative.

In a recent meeting with the school in October 2016 the head mistress said that our daughter is using this experience as “attention” seeking and that she seems to enjoy the attention that she gets when she changes herself. I don’t doubt that my daughter is enjoying the extra attention as she’s a smart cookie, and this has also been a struggle at home as she loves telling people that she has a “medical condition”, even though we’ve tried not to talk about it in front of her. .

In Y1 it seems to be better. Although at home our daughter categorically refuses to accept when she’s had an accident and will scream at us and resort to violence if we even suggest changing her.

Support

We were advised by the paediatrician NOT to make a complaint about the Doctor who called me a neurotic mother because the paediatrician wrote a letter to the practice explaining the extent of my daughters encopresis which made it obvious that the Doctor had made a big mistake.

The practice also changed our daughters laxatives in April 2016 from Movicol to Laxido with no consultation. When our daughter had four nights of liquid poo accidents when she started taking laxido (it was horrific), the first night poo accidents she had had since she was 18 months old, I spoke to the Doctors and was told that they had switched to laxido because it was cheaper and they needed to document exactly what the impact of the Laxido was because it had the same ingredients as the Movicol.

The practice also refused to initially give my daughter movicol because we had it on a private prescription so I had to go through the whole rigmarole of obtaining the online log in details, only to be told they wouldn’t give it to our daughter without a telephone appointment, the first of which would be available in 10 days time. I had to phone the private paediatrcian again, to get her to intervene.

We are now seeing Lily at The Life Right Wellbeing centre and things seem to be getting better. Lily has supported lots of other children who have had encopresis before so we keeping everything crossed that things start to improve soon.

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If I’ve learnt anything from this experience that I would like to share, it is that if your child has chronic constipation DEMAND a referral from your GP to your closest Paediatric Gastroenterology team, as they are really the only people who know what they are talking about.

Things we have learnt about encopresis

Chronic Constipation affects 1 in 100 children.

“Proper” Encopresis is incredibly rare.

The NHS won’t diagnose chronic constipation/encopresis until a child is at least 8 years old. If you want a diagnosis earlier, you need to get an x-ray privately.

Chocolate, Bananas and milk can all cause constipation.

Not only have we cut these out of our daughters diet but we have all found further research that suggest that all forms of dairy products can cause constipation, so we tried cutting out the majority of dairy out of our daughters diet and we try to substitute her food for a few months. However, after three months it wasn’t making much of a difference and it’s actually quite dangerous to cut food out of a child’s diet so our daughter now has limited dairy and goats milk.

The NHS have been pretty crap for us in this situation. Even the NHS website is disparaging about what encopresis and chronic constipation is. The fact that we had to get a private paediatrician to take us seriously, speaks volumes.

Tesco’s sell the cheapest pants. We spend the same on pants now as we did on nappies when our daughter was little. I used to clean them out but now we just bin the majority of them. Cleaning poo off of her other clothes at the end of each day is demoralising enough.

The eric.org website is a fantastic educational tool. It has lots of information and suggested strategies for helping to over come chronic constipation.

We cannot go anywhere without our changing bag. We have to carry supplies with us everywhere we go. It’s not a big thing but it is a thing.

Vanish carpet cleaner is the best thing to get poo out of the carpet.

Following a rigid plan of monitoring when and what our child eats, drinks, how much water she has in a day, how often she has sat on the toilet, the level of what her poo is like, remembering to sit her on the toilet within 15 minutes of every meal (often while she is refusing to sit on the toilet) and cleaning out clothes and pants filled with poo, on a daily basis has taken it’s toll. My husband and I thrive under a challenge but after nearly 3.5 years of battling to get the best support for our daughter and the daily stress of living with our daughters situation, we are exhausted.

Movicol sucks the water out of our child’s body, to redistribute it to the poo. This means that our daughter has to drink a LOT more water than other children. It’s taken 1.5 years for school to really understand this and I frequently have to remind them that she needs to drink more water at school.

One of the side effects of movicol is severe gas.

We don’t have holidays abroad unless it’s staying with friends, because of the change of water, diet and routine, access to laundry facilities and much as I am desperate for a holiday beside a swimming pool, it’s just not practical for us.

When your child has a chronic health condition which means they soil themselves between 5-12 times a day, at any given moment, it affects everything. Everything.

Even if you tell school about the medical reasons as to why your child is off school, you can still expect a snotty letter telling you that your child’s attendance is lower than required.

I dread our child getting sick. It takes a lot longer for her “poo” to recover. Once she is better, even if we reduce her movicol, it still takes a few weeks for things to “settle” down. This is even more challenging because we can’t let her wear pull up’s because this will undermine all of the progress we have made in the past year.

It has been an extremely stressful experience for our family. We’ve been told, time and again, that chronic constipation is more common in boys and one friend suggested that our daughter might be autistic. Nope, she’s in intense pain a lot of the time and no one knew.

Not being able to talk about it to people, because we don’t want to embarrass our daughter, has been tough. Really tough.

The few friends who know about our daughters situation, a couple have suggested that we move her to a different school. If only it was as straightforward as this. Our daughter loves school and has been through enough stress with her chronic constipation that we don’t want to move her to start all over again. It’s taken a while but it finally feels that school realise how serious her condition is. It would be nice if they had a little bit of sympathy and understanding, but you can’t have everything!

Final Thoughts

The paediatrician said that there is nothing as parents that we could have done to stop this. It’s a medical condition and no matter what we did, it still would have happened to our daughter.

Being a “chronic constipation parent” is a very lonely experience. Many of our friends don’t understand what we are dealing with, let alone strangers. We are lucky that we haven’t had many disparaging comments from “well meaning” people. It still hurts though. Most people have never even heard of chronic constipation or encopresis and therefore have no understanding at all.

In my experience, if you think your child has chronic constipation or even encopresis, be prepared to fight. I read online that a man in the US made his child sit with some poo on their nose for a whole day, as punishment for having continuous accidents. This made me weep. All of the children out there who have been mocked, beaten, ridiculed for having this condition because their loved ones didn’t understand or weren’t prepared to fight for them. I am determined that this doesn’t happen to my daughter, even if it has been one of the most stressful experiences of my life. This is also why I am sharing some of our story. If our experience can help another child so that they don’t have to go through what my daughter has, then that will be fantastic.

Our daughters condition is not resolved yet, by any means. It could take years and I’m terrified of the bullying that my daughter is likely to experience the older she gets.

My daughter doesn’t deserve to be treated the way that she might be. She didn’t ask for this.

I am going to continue to do what I can to try to improve everything for my daughter and I will continue to ensure that she gets the best level of care that she deserves.

Other Resources

http://www.chop.edu/conditions-diseases/encopresis

http://www.eric.org.uk/Schools/Toilet_Training

A really brilliant facebook group via this website: http://childhoodsoiling.blogspot.co.uk/

Two brilliant facebook groups: HELP!!!! My child has Encopresis and Encopresis Support UK

A great example of a Hampshire school’s toileting policy: http://los-infants.co.uk/wp-content/uploads/2014/03/Toileting-Policy-2013.pdf

http://www3.hants.gov.uk/supporting_children_with_medical_conditions_briefing_sheet__autumn_2015

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A NHM Reader’s Experience: Tongue Tie

This is a heartbreaking read. I can relate to so much of what is in this post because Miss NHM also had a posterior Tongue Tie and it wasn’t identified until she was 9 weeks old.

Reading today’s post has bought bank a lot of painful memories for me of that very difficult time but hopefully this Mum’s experience may help other Mum’s who are going through, or have been through, the same thing. The last sentence on this post is spot on.

Thank you very much to the anonymous reader for sharing her experience. I know it’s not easy writing something like this but hopefully it’s helped as part of the healing process.

If you would like to share your experience of anything to do with being a Mum or parent, please get in touch.

A NHM Reader’s Experience: Tongue Tie

Tongue tie, as a first time mum I had no clue what this was and the problems your little one can face from it. Throughout my pregnancy as like all mummies to be, I just wanted my baby to be healthy and arrive into the world safely.

However Tongue tie was one of the things no one had even thought to make me aware of, considering it is so common with apparently 1 in 8 babies being born with it and how easily it is to fix. Hopefully by sharing our story I hope more mummies are made aware of tongue tie.

On the arrival of my beautiful baby girl, I was put in a side room at the hospital. The midwife initially checked my baby could breastfeed and then I was left to it. We saw a health assistant once more briefly to check that everything was OK, the paediatrician quickly checked her over and we were given the all clear to go home.

On going home we saw the midwife for the follow up visits. On one of these, they weighed my little girl and found she had dropped weight but this was less then 10% so they were not concerned.

However on her five day check, we went to the clinic and on weighing her, it was found her weight had dropped further. As a new mum, five days post giving birth you are very emotional and it is the last thing you want to hear that your baby is dropping weight, rather then gaining.

At the clinic I saw two older midwifes and they asked me to show them how I was feeding her. This was an eeekkkk moment as I’m not a mum that is confident breastfeeding in front of people. However I knew I had to suck this up and get on with it, so I did.

On doing this, I was told immediately the way I was holding her was wrong and to hold her like a rugby ball under my arm. I was then asked questions about my milk supply and they came to the conclusion this was failing and told me to get some formula in!

I held myself together but on leaving the clinic and getting back to the car, the tears just rolled down as it was the worst thing I could have been told, that I was unable to feed my baby well enough and all I felt was that I was a complete failure.

That evening I tried to struggle through but feeling so low and with no real support on breastfeeding, I caved and sent my husband to Tescos at midnight to buy formula. All I could think was I was starving my baby who was crying and getting more frustrated as she was struggling to feed, so I had to get some milk in her someway. However this did not solve our problems and just brought on a whole load of different issues.

We started on formula and within days we had stopped breastfeeding altogether as she just couldn’t latch properly. We thought this was best and her weight started going up. The midwifes were happy and we were subsequently discharged from their care. We thought great our baby is now on the right tracks and all will be fine. How wrong could we have been!

In the subsequent weeks our little girl started to suffer with colic, reflux and projectile vomiting whenever she had a bottle. The colic was the worst as our poor girl was literally in pain and cried continuously for hours on end as she was just full of wind, to the point she would rattle with it.

We spoke to the health visitor who said to see the GP, so we did. I explained all her symptoms and I was just given medication to try to help settle her. At no point did the GP or health visitor check in her mouth to see that she had a good latch but it was a case of being told that babies do suffer from colic, sickness and reflux when being fed formula and that it would pass.

However the symptoms were just getting worse to the point that one day while I was home on my own, I had given her a bottle but she started to choke and turn blue.

This is honestly the most scary situation seeing your baby looking terrified as they cannot breath. I managed to get her to throw up and she started breathing again but was inconsolably crying.

I took her straight to A&E as my instincts knew there was something wrong with her and this was not normal. On arrival, I asked her to be booked in and told the receptionist what the problem was, she looked over the desk and commented, well she looks ok now, she’s breathing! I couldn’t believe this and politely but in a no messing with me tone, said that I still wanted her seen to regardless of the wait.

On seeing the nurse in triage, due to her age we were taken through to see the doctor. I again explained the situation and what had happened but they had no clue why she had choked and put it down to one of those things.

The doctor in A&E referred the details to a paediatrician and we were taken to the day ward for observation. They again checked her over and I explained what had happened. The consultant said it sounded like she had just choked and that this can happen when babies are so little as they don’t have a gag reflex yet. She said if it happens again to put her on her front and pat her back which should clear it.

Each time we saw someone we were asked if this was our first baby and when we said yes, the ‘look’ of oh they are first time parents worrying too much came out. As she didn’t do this again while we were there, we were sent home with the advice we had been given.

Over the months proceeding this, we struggled on and found ways to help stop the choking with reflux wedges and sitting her upright for an hour after a bottle. While we did this the next challenge we had was getting her to drink a bottle. Our poor girl was still suffering and we felt like we just had to struggle on as it would get better in time, as this was what we were being told repeatedly.

On taking her to her monthly weigh in, her weight was really starting to struggle. The health visitor at my local one looked at me and said oh her weight has dropped what are you doing with her, what’s happened to change this?

Again this is not what I wanted to be faced with, a question to make me feel as though I was at fault for my beautiful baby girl not gaining as much weight as she should. I replied to say nothing had changed but I was still having the same issues. A

gain no one thought to check in her mouth and it was put down to a blip and she would pick up again. I swiftly left the clinic, again feeling as though I had failed my baby girl. I hated going to the weigh ins after this, to the point I would work myself up beforehand so I decided to buy my own scales and do her weight checks myself at home.

On approaching four months old, her weight had dropped to between the 9th and 25th centile. She was also getting to the point she would only drink an ounce or two of milk at a time and then she would refuse anymore. I knew this was due to the pain it was causing her so I spoke to my health visitor but she didn’t really help and said to go and see her on the next weigh in.

I thought this is not right and I was so worried as I knew my little girl was suffering, I needed to find out what was causing it so I decided to google her symptoms. Normally I would never do this as it can give you so many horror stories and cause unnecessary worry but I had to see if there was any possibilities of what was wrong with her. On looking at the search it all pointed to tongue tie.

The helpful reference was this chart that listed out the symptoms: image2

From looking at this list, my little girl had all the symptoms so I wasted no time and booked her into see the GP. The GP checked her but wasn’t sure so asked the midwife at my practice to have a look. She first of all put a finger in her mouth to see what suction she had and the poor girl didn’t have any. They agreed the best thing to do was to refer her to the paediatrician at the hospital that dealt with this and go from there.

On speaking with his secretary on the Monday morning, she took my details and then asked how my baby was fed, I said by bottle and suddenly the tone of the call changed, where she informed me that the paediatrician only dealt with breastfed babies.

Even with me explaining that there was no possibility she could do this and how her health was suffering, I was told he may see her but it would be at his absolute discretion, plus I would have to wait three weeks for this honour.

On putting the phone down I thought to myself sod that, I’m not being made to feel like a second class citizen for bottle feeding my baby as she couldn’t breastfeed so I looked online for somewhere I could have her seen to privately. This is where I found a website that listed all the tongue tie practitioners in the country,

http://www.tongue-tie.org.uk/find-a-tongue-tie-divider.html

I looked through the list of practitioners in my local area and called Katherine. On speaking to her and trying to discuss the problems we were having, I just broke down on her and cried.

Katherine was great, she said she could certainly help and gave me an appointment for the following day at her clinic. On going to the appointment, after explaining the symptoms and looking at her weight chart, she looked in her mouth and confirmed she had a posterior tongue tie which was restricting her tongue by over 50%.

Katherine explained that posterior tongue tie is not picked up so easily as it is not visible but it was very easily treated. Katherine told me what she would do to release the tongue tie which involved one cut to the piece of skin with surgical scissors and that it would take less then a minute.

She asked me to leave the room while she did it and by the time I got to the waiting room and sat down, it was all over. One little snip with the scissors by a trained health professional was all that was needed. This cost £95 privately and I can’t tell you the relief that I felt knowing I wasn’t an over bearing first time mum and that my instincts were right. More importantly, my beautiful little girl would hopefully now start to overcome this and be out of pain.

Picture of her posterior tongue tie
image1

Picture after the procedure

image3I will say this made a difference straight away. The colic and wind settled down as she was not sucking in air. The reflux also calmed down and choking stopped over the proceeding days.

However she had learnt to adapt to having a restricted tongue for the first four months of her life so she had to relearn how to use her mouth and the muscles with her tongue now freed.

This took several months to reeducate her but she is now a completely changed baby. She’s happy, no longer in pain and her weight is back up, which makes me one happy mum.

Looking back, I have such a mixture of emotions about what we went through as a family. From anger to pure sadness that my little girl was left to struggle and be in pain for the first four months of her life.

I also feel so let down by all the health professionals that saw her as no one picked this up sooner. Such a simple thing to fix but the problems and pain it caused her unnecessarily, when she could have been thriving and happy.

Ultimately I have learnt from this, that you should always trust your instincts as a mum, you know your baby best and don’t think you are worrying unnecessarily.

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NHM Writer: Thinking about what to pack in your Hospital Bag!

Thank you very much to today’s NHM Writer who has requested to remain anonymous. Fab post!

Thinking about what to pack in your Hospital Bag!

As I write this I am 33 weeks pregnant with our second child and I am beginning to think about getting my hospital bag together!!

By the time my due date comes along it will have been 3.5 years since I gave birth to our first son so I have been doing some research to remind myself of the sort of things I need to pack.

My labour last time was pretty quick so once I was examined and admitted there was actually no time to go back to the car and collect my bag, luckily, we had our phones with us so we could take some photos as soon as our son was born. My plan this time is to take two bags with me; a smaller backpack with items for during my labour which I will take in first and another one with the rest of the items in to be brought in when needed.

Lots of lists are put together by shops and websites who perhaps have an interest in convincing you (and selling to you) all the items which are ‘absolutely essential’ for your hospital stay.

Obviously, nothing is absolutely essential, and my priorities may well vary from your own, but using my previous experience (and that of a few close friends), I’ve put together a list of items we considered essential along with a few ‘nice to haves’ and a couple of items that you definitely don’t need to take … believe us!!

For You

Maternity Notes
These need to be kept close at hand and taken into hospital / to the midwife with you whenever you go. As the weeks go on I will store the notes in my hospital bag, taking them out with me as required and then returning them when home. It would be also good to keep a copy of your Birth Plan (if you have one) with your notes at this point too.

Comfortable (old) clothes to labour in.
Don’t worry about finding the perfect nightie for labour. Last time I ended up giving birth in the vest top that I arrived in (as I said, it was relatively quick) and the first thing my son did was poo on me so it went straight in the bin. This time I will also be taking some comfy trousers … just in case my labour is a little longer!

Depending on how long you end up staying on the maternity ward you will also want some loose, comfortable clothes to wear in hospital once you’re out of your nightwear and also to travel home in.

Pants
You can buy disposable maternity briefs but I don’t really like them I will be taking a couple of my old pairs which I can throw away if necessary and then I’ll be treating myself to some new ones to replace them …. any excuse!!

It’s worth remembering, if you’ve had a vaginal birth you will most probably be sore and bruised (and possibly stitched) and if you had a c-section you’ll obviously have a very sore stomach and stiches – neither option would be fun with tight fitting or uncomfortable pants!!

Maternity Towels
While we’re on the subject (sort of) don’t forget maternity towels … without going into too much detail, these are an absolute essential!! If I remember right, I found Tescos, Morrisons, Boots and Mothercare to be best. Unfortunately the ones I got from Sainsburys gave me thrush (NOT what you need when you’ve just had a baby) – I think it was something to do with the top layer. You want a smooth ‘cotton feel’ layer … not plastic!! I’m planning to take a pack of 10 in with me.

One of the best pieces of advice I was given was not to use standard sanitary towels because the top layer (which works so well when you have your period) can rub and catch any stitches you may have – eeeeekkkkk!

Nightwear
In my case, I’ll be taking a pair of pjs with me. Nothing too fancy; I’m afraid I always go for comfort over cute. You might also want a dressing gown for wandering around the unit, the same goes for slippers … think I’ll be taking a hoodie and a pair of flip flops!

Nursing bra / Sleep bra
Being relatively ‘well provided for’ in this area sleep bras were pretty much indispensable for me but after giving birth I’m sure this is pretty much the case for everyone. Most suppliers suggest that it’s better to get fitted later on in your pregnancy and then again a couple of days after giving birth because your size will probably change considerably. It might also be worthwhile taking some breast pads and nipple cream in with you.

Food and Drink
As mentioned, my labour in hospital was pretty quick so really had no need for anything other than water. I took a couple of bottles in with me and a pack of straws. I also packed snacks for myself and my husband, I seem to remember including Natures Valley bars, Haribo and a pack of Digestive biscuits. Due to the timing of our labour and birth I missed breakfast and so these were gratefully consumed once our son had safely arrived.

This time I plan on taking the same and also my Britta Fill & Go bottle too.

Other items you might want to consider taking:
• Water spray, face wipes, lip balm & hairbands
• TENS machine if you have decided to use one
• Toiletries & hairbrush – I know many people don’t have the energy to bother showering but it was a massive must for me to feel a little more normal
• A Towel – the hospital ones are not the most luxurious so you might want to take your own (it’s been suggested to me it should be a dark colour)
• A Pillow – especially if you have a particular favourite you can’t sleep without
• Electricals – Camera & Mobile Phone, IPad / IPod (and chargers)
• A book or magazine
• Change for the Car Park
• Change of clothes for birth partner

For Your Baby

Nappies
As with the maternity towels I’m going to take a whole pack but if space is a little tight then take fewer but make sure you have left the rest somewhere obvious at home or in the car so they can be easily grabbed and brought in by a visitor if required.

Wipes
I think many maternity units still prefer you use cotton wool to clean baby with so I will probably take a small pack and I also plan to use Water Wipes. They’re not cheap so I’ll buy a couple of packs and then move on to my preferred brand.

Sleepsuits / Bodysuits / Vests
Twice as many as you think you’ll need. I once heard that trying to dress a teeny baby is like trying to fit an octopus into a sandwich bag so make your life easy and pick outfits that open up down both legs.

Hats
We didn’t worry too much with our August baby but this baby is due February / March so definitely a must.

Blanket
I’ll be packing a thin cotton blanket for in the hospital and also one which fits into the car seat and allows the straps through which ensures your baby is safe and snuggled up warm. The one we have is from a company called Morrck but I think you can now get them from various places.

Car Seat
They won’t let you drive home without one but don’t worry about bringing it into the hospital until you are ready to leave, it will just take up space.

What You REALLY Don’t Need
Hairdryer & Hair Straighteners
Whole Make Up Bag
5 Books
Mini bottle of champagne (yes, seriously)

A couple of links that might help …..

http://www.which.co.uk/birth-choice/articles/hospital-bag-checklist?gclid=Cj0KEQiA5dK0BRCr49qDzILe74UBEiQA_6gA-m_UT43NqdaX2_bBo8mDBCjmLTzcoF3k2r4f-1ViieoaArUM8P8HAQ

http://www.nhs.uk/conditions/pregnancy-and-baby/pages/pack-your-bag-for-birth.aspx#close

http://www.babycentre.co.uk/what-to-pack-in-your-hospital-bag

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NHM Interview: Gino D’Acampo

I’m very excited to feature our first interview on NorthHantsMum. I was invited to meet with Gina D’Acampo but unfortunately couldn’t make it due to work commitments (boo hiss!) so I asked my NHM Writers if any of them would like to meet Gino and ask him some questions.

Thank you very much to Karen for her lovely review below (can’t BELIEVE she also got a snog from Gino! lol) and also to everyone who put forward questions for Gino via “Louise nhm Smith“.

NHM Interview: Gino D’Acampo

Gino

Small J and I were very excited when NorthHantsMum asked us to visit Waterstones and interview chef Gino D’Acampo (although I expect Smalls excitement had more to do with the singing train in Festival Place!)

We arrived to find a rather large queue of very excited people all clutching a copy of Gino’s new book ‘Gino’s Islands in the Sun,’ waiting patiently to catch a glimpse of the author.  We hurried to get a copy and waited inside the store in anticipation. Soon word went round that he was here, but lost in the backstage area behind the shops.  Thankfully Gino found his way through the maze and we were lucky enough to have the first opportunity to speak to him and ask him some of your questions

We asked Gino how Italian’s foster a healthy attitude to food in their children. Gino answered that it was easy as that’s how they are born. Italian food is healthy and delicious so it is not difficult to get children to love it. In his book he mentions rules that are taught to Sardinian children including taking a walk and going out and enjoying fresh air whatever the weather which might go some way to explaining why Sardinians have such a long lifespan.

One reader wanted to know who Gino’s food inspiration was. He told us that it was his Grandfather who used to cook him anything and everything Italian. He used fresh simple ingredients to make wonderful Italian dishes. I could understand how that would cause him to fall in love with food.

It’s easy to see where Gino gets some of his rules for life, ‘Celebrate your elders’ and ‘use fresh ingredients where possible.’ I also like the one regarding drinking a glass of red wine daily and the bonus is that he suggests Cannonau, from Sardinia, which contains more antioxidants than any other wine in the world.

Gino’s suggestion for a simple fun Italian recipe to cook with your children was pizza.   In his new book there are 2 pizza ideas, one with courgette ribbons and flowers and one with anchovy, olive and capers.

Gino was kind enough to sign my copy of his new book and I am planning to try out his suggestion of courgette pizza out on Small J soon. Of course he’s going to have to help to cook it.

After being kissed on the cheek (blush) by Gino in front of the whole store he was nice enough to pose for a photo with us. We left him to continue to meet the rest of his fans (and went to visit the singing train….again).

Karen and Small J Johnson

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Review 2015: Elderly Primagravida

Thank you very much to Kathryn for her Review of Elderly Primagravida in 2015!

Elderly Primagravida and 29 weeks

….a woman who becomes pregnant for the first time after the age of 34/35 (age depends on what website you look at!)

The fact that I actually became pregnant at the age of 38 and is classed as “elderly,” left me a bit miffed to say the least!

However despite this and whether this has been down to my “status”, my pre existing medical conditionals or good luck, I cannot fault the care I have received so far from both my Community Midwife, the Antenatal clinic and the Day Assessment Unit.

I guess I’ve more visits to both the Community Midwife and Antenatal clinic than I the average pregnant lady and each time, I’ve never felt that I’ve been a time waster or a neurotic pregnant lady, quite the opposite and I was reassured that it is ok to worry and best to get things seen to rather than leave them and at any time I have the need to have my worries ironed just call and I will be seen at the Day Assessment Unit at the maternity unit.

I am also under a Consultants Obstetrician, I think because of my “elderly” age and pre existing conditions and again I can’t fault the care I have been given.  The last appointment I attended my Blood Pressure was a little high to say the least, this of course was duly noted and after waiting what seems an age.

I finally saw the Consultant (not the original one as previously but still well informed and very professional), she covered all the normal stuff but was concerned about my BP which was measured a couple more times, it was still high and whilst she was writing up her notes she said she was debating with herself what she should do about this BP.  She came to the decision that I should be admitted, much to me and my partners disappointed. I didn’t have to wait long too be escorted up to the ward where a bed was waiting for me.

Feeling a little unnerved I kind of settled on the bed, while waiting for a Nurse to let me know what was happening.

My Blood pressure was taking a couple of times before I was given a little orange tablet. I was monitored for another hour or so before I was provided with food (a nice surprise seeing as I hadn’t had lunch as I was due to go back to work and it wasnt half bad)

Whilst eating my tea, the Doctor came round and prodded and poke me, asked a few questions and said that my BP had come down a significant amount and she was happy for me to go home….yay!  Feeling relieved we left the Ward….until next and last time ( when we finally get to meet our little man)

I’ve been very fortunate to have had such a good experience with all the Healthcare professionals who have dealt with me and my pregnancy, even if i haven’t/ am not enjoying the whole experience yet/so far but i am sure all the mood swings, tears and tantrums will all be worth it….

Before I sign off I leave you with this… if you are worried at all, no matter how big all small

Keep Calm

And

Call a midwife! 😀

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NHM Reader Experiences: Would you like to write a post on NorthHantsMum about your experiences of parenting?

I’ve had a few people ask me recently if they could write a post just for NorthHantsMum.

I always say YES PLEASE!!!! because it takes the pressure off of me having to post every day, it helps the person who is writing the post and it gives another perspective to NHM Readers that I may have no experience of.

Amber did an awesome job on the reusable nappies post that was posted in March and I’ve been meaning to ask if there was anyone else who wanted to write a post about their experience of an element of parenting.

So, in the same vein as NHM Secret Reviews, is there a burning issue that relates to your under 6 year old that you would like to share your experience of? Something that might help other parents?

Your post can be anonymous if you would prefer or you can be credited for your work by having your first name on a post, it’s totally up to you.

If this is something you would like to do, you can email me at NorthHantsMum@gmail.com with your post and any pictures (no more than 10 maximum) in .jpeg format.

Thank you in advance!

A NHM Readers Experience: Reusable Nappies

Amber sent me a very lovely email asking me if she could share her experience of Reusable Nappies with you all.

I jumped at her email! lol.

You can really tell how passionate Amber is about reusable nappies from her post below. I wish I had seen this post before my little one was born as I wanted to use reusable nappies but had absolutely no idea where to start.

If there are any topics that you feel passionate enough about enough to write a post that you think NHM Readers might be interested in, please drop me a line at NorthHantsMum@gmail.com. Thanks!

Thank you to Amber for the excellent post below!

Reusable Nappies

When I volunteered to write this article I questioned why I had done that. I’m not a rainbow eco warrior mum that feels passionately about the amount of landfill that our population creates, nor a crazy corporate conspiracy mum who believes that disposable nappies are filled with harmful chemicals which are burning our babies’ bottoms.

No, I just enjoy (yes, enjoy!) using cloth nappies and I wanted to share my experience with other mums in the hope that others will have that experience too.

I had grand ideas of using cloth nappies with my first baby but when it came to it, the sheer upheaval of having a new small person in my life was too much and I bottled, resorting to ‘easier’, more ‘convienient’ disposables, and those are in inverted commas for a reason, more about that later.

However I was pretty disgusted that we had gone from a family which produced less than a quarter of a wheelie bin of rubbish a week, to one which wheeled out a bin containing more than double that amount, groaning under the weight of stinky, un degradable nappies.Nappies further wrapped in little plastic bags no less.

This was further compounded by the fact that this continued for years! Number 1 was potty trained during the day at around 2 years and I cringe at the thought of just how many of our nappies were just sitting, festering in landfill.

So when I found I was expecting number 2 I was determined that I was going to use, and succeed with cloth nappies. I started researching in earnest, in hindsight I think that was part of the problem with number 1, I just wasn’t prepared enough and when it came to it I just gave up.

As I started reading about the different types of nappies, I was truly baffled and I quickly became quite overwhelmed by the variety, let alone the different makes.There are 2 parters, all in ones, pockets and hybrids, to name but a few, and I had no idea which ones I really should be choosing.

Then I was recommended thenappylady.co.uk, Wendy Richards, she runs out of Farnham and has a fantastic website which sells everything cloth related but also has some invaluable advice pages and an advice questionnaire.

The questionnaire is very in depth and aims to help you find the best type of nappies, number required and cost for your personal circumstances.

She asks what drying facilities you have, how many times you’d want to wash per week, how you rank various properties of the nappies, what height and build you and your partner are, seemingly irrelevant information but it all goes in to determining which nappies would be best suited to help you succeed with cloth nappies.

My recommendation was for a brand called Bumgenius with their Freetime nappy, this is an all in one, birth to potty nappy, but I almost fell off my chair with the cost! Each nappy was £15.99 and it was recommended I had 15 of them!!!

It’s an enormous outlay and people often ask me if I really think I’m saving money this way when you factor in electricity, washing powder, washing machine wear and tear, hassle factor etc. There are many calculations out there which argue that it is, but actually that’s not the sole reason that I wanted to do it.

Despite having the nappy lady’s recommendation for my Freetimes I was still hesitant to part with the best part of £300 for something that I wasn’t sure was going to work, which is when I found the Basingstoke Real Nappy Library. This is run by a lovely lady, whose name completely escapes me, out of the NCT Coffee and Chat group in Brookvale Hall.

She’s there on the first Friday of the month with a selection of cloth nappies and she sits with you going through everything you’d want to know and ask and more. She said that it would be best to wait for baby to come along then she would pop round to my house, have a new baby cuddle and a cup of tea, and leave me with a selection of nappies which I could try for however long I wanted (within reason!). It is a voluntary organisation but she asks for a donation which I was more than happy to provide given how helpful she had been.

Armed with my selection of birth to potty nappies I went about trying them out on number 2. I had several reservations about cloth nappies and fit was one of these, it’s something that the nappy lady asks in her questionnaire.

I didn’t particularly like the ‘chunky bum’ look that was inevitable with cloth nappies and on a 4 week old baby, birth to potty nappies (these are adjustable using poppers, allowing them to be used, as the name suggests, all the way from birth to potty training) do look a little ridiculous but I had to look beyond this and at the greater picture.

I never thought I would like number two’s chunky bum but I really do now, I guess part of it is what you are used to, but disposable bottoms feel quite wrong to me now and that saggy nappy look is really not a good one.

As a result of trying out my nappy selection I took the plunge and bought my cloth nappies, opting for the ones suggested by the nappy lady and buying  10 (ouch!!), I still couldn’t manage to buy the number I needed to wash every other day.

I then found that there was a huge market for preloved nappies, initially I did recoil at the idea of using nappies which had been used on other babies’ bottoms however the reality is that if they have been washed properly the nappies are still in fantastic condition and I now have no reservations about buying preloved.

There are numerous Facebook selling pages where you can buy or swap them at a fraction of the new price using Paypal which does offer an amount of protection to the purchaser. I have gradually increased the number of nappies in my ‘stash’ using preloved and further orders from the nappy lady.

A year later and we are still using our cloth nappies and I do enjoy it.

That may seem to be a strange term to use but let me explain.

Every time I put a cloth nappy on it means that the only thing that I throw in the bin is a degradable liner to catch post weened poo and that’s going to continue until number 2 is out of nappies.

They are pretty, I’ve got a lovely selection of colours, some people are proper addicted to collecting nappies and pay extortionate amounts of money for limited edition prints but in my opinion at the end of the day they are there for collecting wee and poo! They have got to better for those delicate, peachy, little bottoms.

There are plenty of people who are convinced that the chemicals in the nappies are very bad for babies’ skin, I have to say that I believe that they will have been tested rigorously, however I do believe that is far better for the skin not to be next to be constantly next to something which has a large quantity if chemicals in it. Both my children suffer from eczema and number 1 had some awful nappy rash, something that has been limited to teething with number 2.

There is a phenomenal amount of research that goes into the development of cloth nappies, inner fabrics are super absorbent so will hold lots of wee, outers are  waterproof so contain all the wetness and most, mine included, have a soft fleecy layer which wicks away the moisture from the skin so they don’t actually feel wet. They really aren’t the outdated ‘terry towelling fastened with safety pins’ that some people think they are.

What about the other cons of using cloth nappies?

There are some, but I don’t find them an issue and the pros, for me, certainly outweigh them. Hassle factor – yes you do have to do a wash every other day/three days  but it has just become part of my routine and even in the early days I didn’t find it particularly bothersome.

My nappies dry very fast and in the summer on an average day they would be dry within a couple of hours, in the winter it is more like a day when hung inside. I have a sock hanger from Lakeland which allows me to hang all nappies out on one hook and there is something extremely satisfying about seeing lots of clean nappies hanging out to dry in the sun.

Dealing with smelly poo filled nappies – just like disposables they just get whipped off and shoved in the nappy bin or bag until wash day. Pre weaning all nappies went into the wash as is, poo and all, but post weaning I just remove the liners and bin those before putting them in the wash.

I do pay more attention to the cleaning of the washing machine these days to keep it smelling fresh, something which should be performed regularly anyway according to those ‘in the know’, but that only consists of running a super hot wash every now and again or washing an empty load with soda crystals.

Cost – the initial outlay, as I said, is hard to swallow but as I say I am using them for other reasons so I had to keep that in mind. I do hope to recoup some of the cost at the end of our use by selling them on the Facebook selling pages but that would just be a bonus.

I also went down the route of reusable wipes, which if using cloth nappies is a no brainer. These are like little flannels which are kept damp in a Tupperware box and are far superior for wiping bottoms than any number of baby wipes, they just get put in the wash along with the nappies for using another day. Inconvenience – after washing I do have to fold the nappies up, put liners in each and stack them ready for use, when I’m busy I do get irritated by this but in reality it takes a matter of minutes to do and then they are just ready to go.

When out and about I just take clean nappies with a wet bag which I can put the dirty nappies in, wipes are taken in a mini wet bag, it’s not much different from disposables.

Phew! That’s a lot of words, maybe I am more passionate about cloth nappies than I had first thought?

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