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...
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