Thursday, 14 February 2013

Ella's feeding story

This week is Congenital Heart Defect Awareness week (7th-14th Feb) and also Tube Feeding Awareness week (11th-17th Feb). It therefore seems a good time to write about something that I am often asked about... Ella's feeding issues.

It seems appropriate that the awareness weeks for both these causes fall at the same time as they are very closely linked. I will try and make this simple as there's a lot of science and physiology involved!  Hope it is understandable and makes sense as there is a lot to include.  I will make sure there's lots of pictures too...

As soon as Ella was born, she struggled to feed.  We tried breast feeding several times the night she arrived but she didn't latch on and just didn't seem interested.  The midwives cup fed her but this wasn't enough and the next day she dropped her blood sugars and was transferred to the Special Care Neonatal Unit.  She also had a low temperature and oxygen levels and it was at this point that a heart defect was suspected.  She had her first ECHO (heart scan) at 36hrs old and a Ventricular Septal Defect (VSD) was found...

Normal Heart

At this point, I was expressing colostrum into a syringe which they were feeding to her every 3-4 hours (we had to wake her for every feed as she was very sleepy in those early weeks).  We kept trying her at the breast as well, but she only managed to latch on once or twice and only for a couple of minutes at most.  

Feeding is like a work out for babies.  It increases oxygen demand and cardiac output - the heart has to work harder to meet the bodies demands.  If there is a defect, the heart has to work that bit harder to try and deliver extra blood flow and oxygen to the body.  Babies with heart defects can become breathless, sweaty and fatigued when feeding.  They can also be slow to gain weight as the extra work their heart has to do requires more calories and the fact that they can't physically feed for long enough as they get too tired.

In terms of Ella's heart, she was started on frusemide and spironolactone at 3 days old to help her wee lots, keep the strain of any excess fluid off her heart and reduce the chance of her heart going into failure.  She was very well other than the feeding issues, didn't need oxygen and they were happy that she would be ok on the meds until she was big enough for her heart surgery (5kg weight and about 6 months old).  

We stayed on the neonatal unit for 13 days to establish feeding, ensure she was gaining weight and for Ella to have phototherapy as she was jaundiced.  She was 7lb 4oz at birth (a good weight despite being 37 weeks and having Down's Syndrome). Ella dropped 15% of her birth weight to 6lb 3oz within 4 days (up to 10% weight loss is deemed acceptable in newborns)..  


Ella was cup fed to start with, then when breast feeding became all too stressful we took the decision to bottle feed her expressed breast milk which went well in those early days...

I do remember feeling very detached from Ella at this time. She didn't feel like my baby at all - I would express milk at the times she had feeds whilst Ian gave her her bottles. 

On top of having a heart defect, babies with Down's Syndrome can also have low muscle tone - this means that their muscles are less developed and they are more 'floppy' babies.  This affects the muscles all over the body - and there are a lot of muscles needed for feeding.  Muscles for sucking, swallowing, digesting and muscles for seemingly little things like keeping your stomach sphincter shut.  And if your sphincter can't shut properly then your gastric contents can come back up your oesophagus, causing reflux, pain and vomiting (not what you want when your baby is needing extra calories to gain weight and they're vomiting up a large proportion of their feeds).  

The low muscle tone can also mean that any gastric contents may be able to make their way into the trachea and lungs (silent aspiration) causing chest infections and other problems.  And constipation can be a problem as the gut doesn't move as well, again due to low tone.

So, at 13 days old we were in a feeding routine,  a mixture of formula and I was still expressing breast milk (pitiful volumes probably due to stress) so we were finally allowed to take Ella home.  Over the next few weeks Ella's feeding became more erratic and stressful and she began to take less and less volumes.  Her weight barely changed despite being swapped onto 'Infitrini' high calorie milk at 5 weeks old.  

On January 11th 2011 Ian had gone to work and I was alone with Ella and she just wouldn't feed.  She'd not had any milk since 11pm the evening before, wouldn't wake up properly, no wet nappy and her mouth was dry.  I'd had enough of people telling me to persevere and nobody making any decisions about her poor feeding.  I called Ian (in a complete state from what I remember) and we took her into Manchester Children's A&E.  They admitted her with 'failure to thrive' and she had an NG tube placed to give her feeds through.  

Never thought I'd be stood in A&E demanding that my baby should be tube fed but we were left with little other options (the registrar who saw us was more than a little undecisive and I think he at one point suggested that we go home and await our midwife to see us before making any rash decisions..... I wasn't impressed, the state of Ella was plain to see and the nurse in me took charge!). 

Over the next 4 days she stayed in hospital as they started her regular feeds and increased the volumes, which she tolerated well and her weight gain was immediate - much relief all round...

Ella's first year growth/weight chart

Knowing that she was struggling so badly to feed made the doctors realise that her heart was tiring her more than was first thought.  While she was in hospital, another ECHO was done and they started Ella on Captopril to help reduce her blood pressure and take some of the strain off her heart. And then we were allowed home, with a very clinical feeding regime - set volumes at set times.  And the not so lovely job of re-passing the tube if it comes out... 

Once the NG tube was in, the stress on us, created by her poor feeding was immediately relieved.  We gave her what she could manage from the bottle (normally 20-30mls) and the rest went down the tube (60ml in total every 3 hrs).  Once babies under 12 weeks have an NG inserted there is a big emphasis on keeping their suckle reflex (ability to suck).  This is why the bottle is offered at the beginning of each feed, to keep up the practice. After 12 weeks sucking becomes a learned skill - the reflex disappears - as the baby has acquired the ability due to doing it from birth.

However, after just a few days Ella developed a heightened gag reflex and wouldn't tolerate anything in her mouth. This meant she became completely NG dependent and gave us further worries for the future as to how we would wean her.  We worked hard with the speech and language therapist to overcome her heightened gag reflex.  In the end, it was Ella who cured herself, once she found her fingers and thumbs and was constantly putting them in her mouth. 

First bath at home with tube. Fat tummy and thighs for the first time!

One of many 3am bolus feeds

What wasn't made clear to us was who (medically) had 'ownership' of Ella's tube feeding.  Nobody set a management plan for how long we should keep it for - we just kept it in and fed her according to what her weight required.  Once she was referred for her heart surgery at Alder Hey we became aware of the cardiac feeding clinic and we were then seen regularly by a gastro consultant, dietitian and speech therapist.  We made the decision to have a PEG tube inserted when she had her heart surgery as the NG tube was becoming a less ideal way of feeding due to her oral hypersensitivity issues and the fact she was becoming more aware of it.

Having the feeding tube meant we could use a pump to bolus feed her rather than a syringe and gravity.  So we had her high calorie feed delivered once a month and set it to run through the pump over a set time.  The pump was fully portable and we soon got used to feeding her out and about...

We had started weaning her at 17 weeks to give her some oral stimulation and try and get her used to having the sensation of food/milk in her mouth again.  She had also started by this time to put her fingers in her mouth which also helped reduce her heightened gag reflex.

At the time of her heart surgery (22 weeks), she was too unwell to have the PEG inserted and so we decided to see what she would be able to do now that her heart was 'fixed'.  We began giving her milk from a flexi-cup at the beginning of every feed (during the daytime).  She managed a few mls but after one month she was still very much tube dependent.  So in June 2011 she had the PEG inserted...

One of the first pictures I have of Ella with her PEG in - did mean we got her beautiful face back.

So, once the PEG was in, we could safely feed her all her milk requirements overnight while she slept and try her with the feeding cup at mealtimes during the day.  Over time it became clear that she was managing more milk from the flexi-cup.  We added some thickener to the milk to slow it down a bit so she had time to co-ordinate her swallow (which there were no problems with). I took the decision to feed her less milk overnight so she would wake up hungrier and want more food and milk during the day.  It was a balancing act but we did manage it in the end and one day when she was 10 months old she took a whole feed from her cup.  Didn't look back!

The PEG was removed on 23rd February 2012.  Although it was a hard decision to have it put in in the first place, we know it was the right thing to do and gave Ella the chance to learn how to feed whilst still getting the nutrition she needed to thrive and develop.

She came back from theatre sat up, pointing frantically and telling the nurses what for!

To say Ella's feeding got off to such a rocky start we were incredibly lucky with her.  She had no issues with her swallow reflex, overcame her heightened gag reflex and had no issues with textured food or lumps.  

Still loving her food now... 

And, even though Ella had a feeding tube for much of her first 18 months, it never stopped her doing anything or having fun...

Having a baby with feeding problems is hard.  But there is help and support available. Cardiac feeding clinics such as the service run at Alder Hey, speech therapists, cardiac liaison nurses, paediatricians and Health Visitors can all offer advice and support.  

There are also other services such as the home respite service run by Lagan's Foundation charity

There is the talk tools website that offers aids for feeding/speech and language issues.

Children's Heart Association is a North West charity for children with heart defects or other cardiac problems.

The Down's Heart Group offer help and support to families with a child who has Down's Syndrome and a heart defect

So that is our story, thank you for reading xx


  1. Great post. Thanks for sharing. As a volunteer with Lagan's Foundation it's lovely to get an incite into how feeding issues affect everyone. Ella is absolutely beautiful by the way!

  2. What a great blog..And it has given me hope that my little boy who will not swallow and has nothing wrong with his swallow he just wont do it due to really really really bad reflux might eat...He will put food in his mouth and taste it but will not swallow if he does he will make himself sick..It is the hardest thing in the world to watch your child not eat...But after seeing your journey and how happy your little one is..there is light however far away down the tunnel it may be....We have been told that once he has his TOF p/a repair he may fingers crossed...but thank you for sharing xxxx

  3. Thank you for explaining this so simply Amy

  4. What a lovely post, seems you had a stressful time of it! Your little girl is beautiful. I love the photo of her in the bath x

  5. Thank you. It's still strange seeing it all written down as it was very stressful and emotional time. We're lucky Ella is doing ok now. Thanks for your comment x

  6. Thanks for this post - it is a great help to me. My daughter Martha was born in December and we received the DS diagnosis at birth and then a diagnosis of a complete atrio ventricular septal defect a few days later. Our story from that point on very much mimics that of Ella's and your description of Ella's feeding decline, NG insertion and subsequent Peg could have been written by me! We have just been advised to have the G-tube inserted and so we are now researching what that will mean and I came across your blog......suffice to say that seeing Ella so clearly enjoying her food makes my heart soar (and she's not even my baby!) I am very much hoping that it will be the trigger that Martha needs for her feeding to improve as I feel that we have sort of stagnated where we are now - she will take some food off the spoon (so good news that she can do it!) but it's not consistent and not in sufficient quantities. I feel hopeful that as Martha and Ella have been so similar in their feeding trials and tribulations to date we might have a happy pasta-covered girly soon too! Sx

    1. Hi Sarah, thank you. We hesitantly had Ella's peg inserted but knew it would give her the time and support she needed to start eating and with hindsight it was the best decision we made in terms of her development overall. She is sat with me now, eating her favourite snack, popcorn! It wasn't easy, we worked hard everday, lots of repetition and encouragement but it did pay off. The first year of our babies lives is often the hardest and their development does take a knock with everything else they have to deal with. Once her Peg is in and her heart is fixed she will be able to concentrate on developing and it sounds as though she's got a lovely family who'll support her. Good luck, let me know how you get on and if you need any more advice please ask xx

    2. Thanks Amy - we'll keep you posted! The request has been sent to the surgical team to have her listed for surgery so we are now just waiting for a date and meanwhile persevering with persuading her to eat from the spoon and drink from the sippy cup......slow going, but she is making more progress so that's good news! Her heart surgery was in April at the Evelina in London and her PEG will be inserted there too so I feel confident about the surgery but its just a hard decision to elect for her to have surgery again. Means to an end I suppose. Did you only ever use the open cup for Ella to drink from orally? Bottles are hopeless and make Martha gag, she is mildly interested in the sippy cup as it has a nice teat that she can chew on (for her teething!), but haven't tried an open cup yet. Perhaps that would be a good next step? Also, on an unrelated matter, have you been using signing at all with Ella? We are planning to try using Makaton and I was just wondering if you went down this route and if you have found it useful? Sx

    3. Hi Sarah, we did use the open cup for Ella (see Ella's story or 'a bit about us' - links at top of page as there's a pic of her using one). I had to order it from the internet as our SALT therapist didn't know about them! I will try and find the link - they are about £18 but you get 5 of them so we left one at granny's house and she had one at nursery as well as at home. We also used some 'thick and easy' powder in her milk, her swallow has always been safe but the thickener just slows down the fluid to give her time to get the liquid to the back of her mouth and swallow safely. You can get the thickener on prescription if your healthcare team think it's appropriate for Martha. We found we had the most success with the open cup as, like you say there is nothing distracting to chew on and nothing has to go into the mouth to make them gag. it also helps get the oral sensation of eating/drinking going again.
      We started signing with Ella quite early on and she's really good now - we used the makaton and I would suggest watching Mr Tumble - once you get past the fact he's mildly annoying (as he's aimed at children!) I have learnt so much from him as every programme is themed so you learn signs in context rather than from a book - it's never too early to start but again expect lots of blank looks and disinterest to start with. Repetition is the key for everything we have found with Ella. Good luck with the surgery, keep me posted and kiss for Martha xx

    4. Here's the link -although it says the green ones are stiffer as they are supposed to be used independently we had no problems holding them. They are flexible enough to squeeze the top in a bit so it fits your little ones mouth.

    5. Brill - thanks so much for this, I will get on the case now and get some ordered. We are using the liquid thickener in her sippy cup so I'm sure we could just try this in the open cup too. Funnily enough, I have just started watching Mr Tumble with Charlotte, our older daughter who is 2, and totally agree that learning in context is the way far though the only ones I seem to be able to remember are chocolate, snake and owl which, whilst very useful, are going to make for a curious conversation!! It really is so great to be able to pick your brains on topics like this as I find it is a really hard bit of being a mummy to a baby with DS that no-one I know has any experience of issues like feeding with NG tubes, weaning a hypotonic baby can be very isolating. I have been on a brief Makaton course to learn some of the basics but was unsure when to start as, as you say, when I have tentatively started using some of them with her, all I get are blank looks! (I think part of me was expecting her to clap or something!?). I will start again and just accept some blank looks and get ordering open cups! Thanks again, big kiss from Martha Baby X

  7. Amy you have made my heart sing. Thank you so much for posting this. My daughter is 17 weeks old now, and when she was delivered she was diagnosed with Freeman Sheldon Syndrome. Only 150 cases of this are known in the world. It means she has a very small mouth and she too has been unable to suck from a bottle.
    Isla has had the NG in since birth and while she use to drink a few mls by bottle like Ella after a spell of Bronchiolitis she lost all interest in dummies and teats. We also attend a feeding clinic here in Cambridge but no one has been able to say "don't worry it will be ok, she will be able to eat etc..." At her last appointment we discussed the PEG and are now waiting for the operation appointment to come through.
    You have given me lots of hope. I hope you and the family had a great Christmas, I know you have just made mine xxx
    Please keep us up to date with Ella's progress, she is such a cutie

    1. Hi Nadine, congratulations on the birth of Isla. I am really pleased you're already known to the feeding clinic - we didn't get referred for months so it's good that Isla is getting their input and advice early on. It's such a stressful time when your little one has feeding issues and not knowing what the future holds. I'm really pleased that our story has given you hope and thank you so much for taking the time to comment too. Please keep in touch about the PEG and how Isla is doing, I hope you enjoyed your Christmas too and all the best for 2014. I don't know if you're on facebook at all, but there are some good parent run groups for children who are tube fed - I can find the links for them if you'd like them? They were set up after we needed them so I haven't joined them but I know other parents who are members and have found having that support from other parents really invaluable. Take care and if there's anything else I can help with please ask, Amy xx

  8. Why is there this reluctance to address feeding issues proactively early on? My twins were born on a similar centile to Ella, and didn't have Downs but rather reflux and gut issues. Instead of intervening our hospital let us struggle as they both slipped off the entire chart and flatlined for 3 weeks. They tok eight MONTHS to get back on the chart and I am still cross and distressed about it to this day - 8 1/2 years on. They had physical developmental delays because of the months of FTT but no one at ANY point suggested a tube. The sad irony was that one ended up with a G tube for 6 years after starting to get back on the chart. #TeamT21

  9. and... we also had the same issues as you over ownership and management of his G tube. Getting it removed was ok, I could do that (he had a Mic-Key button) but when the stoma failed to heal it took 9 weeks for anyone to decide which hospital should be closing it surgically. Unbelievable.

    1. You can certainly appreciate the 'watch and wait' - who wants to have their child NG fed when a little time can be all they need.... however, I rarely hear of watching and waiting/time approach being very successful. And, you're absolutely right, there is a real reluctance from health professionals to make decisions and act - it's most definitely where mothers instinct comes into its own. It's a very upsetting and frustrating process, I don't think unless you've been through it you can quite understand how all consuming and absolutely draining having a child with feeding issues is (whatever the cause of those issues are). There's definitely room for improvement in this area of healthcare. Hope your little boy is doing ok now , thank you for stopping by and for leaving a comment
      Amy xx


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