On 8th June 2016 Finn came home from hospital at 41 weeks gestation, after 118 days in intensive care he was discharged just one week past his due date! His stoma was reversed in another round of open abdominal surgery (he didn’t require it forever, just 7 weeks in fact) and once he got over his sepsis, once his gut was bypassed and had the chance to heal, on sufficient TPN and some milk feeds, Finn was growing, the stoma gone, no bowel was resected and he was on 100% oral feeds within just 7 days. It was simply remarkable! We were told not to be overly optimistic, he may need to lose significant lengths of intestine if it had not recovered, he could have strictures and narrowings that had to be removed, he could take months to reach a point of feeding orally, he could take months to come off TPN, but he didn’t and he was home, for the first time in his life, within a mere 10 days of his reversal surgery at a giant weight of 5lbs! We had gone from the most dramatic and intense NICU journey to Finn being one of the first babies to make it home of the cohort we knew from the time of his birth at UCH, and we just couldn’t believe it. I don’t want it to come across as oversimplified for what actually remained a very difficult time (we still had another 2 months plus in hospital with the daily ups and downs) and has continued into a difficult existence, but this is where I will end my talk of Finn’s newborn life, because I want to transition from this turbulent reflection to what is going on today and the least I can do in the spirit of raising awareness is share our experience of the ongoing implications of being born a premature baby as it’s complex and there is so much to discuss in the post-discharge medical world. The ongoing challenges that babies face after their first few months in hospital tend to fall into a few categories; some babies have trouble with one or two areas, some none at all, some have many, many complex problems. Most commonly, for those who have done fairly well since birth, the problems tend to be respiratory (oxygen and some ventilation support) and weaker lungs during the winter illness season, developmental (a potential Cerebral Palsy diagnosis or simply support with developmental delay and achieving milestones) and lastly I’d probably say, feeding and growth.
We’re very lucky that Finn’s development has been excellent, not that I didn’t panic as each appointment with the OT approached, but I felt more and more at ease as I saw him behaving the same as all of the other babies around me, full term, completely healthy and in reality as the months passed and he got older, it was clear to see for myself his obvious engagement and emerging personality. That said, I was consciously aware of the time frames of baby developmental milestones- what to look forward to (or out for) and what to help him work on- for anyone interested, a great book is ‘Your Baby Week by Week’ (by Simone Cave and Dr Caroline Fertleman) and while it is very good to keep track of these things, it is also important to note that most mothers of healthy babies read these books as interested parents, not parents panicked that their baby has a high likelihood of perhaps never meeting such milestones. It is also so important to stress that however many baby books you buy, no matter how many peers you (however accidentally) compare your child to- they do things at their own pace, they are all individuals and Finn, with his head too big for his body, didn’t roll over until he was 7 months but walked at 13! I have mentioned before, too, that Finn got off rather lightly as his lungs were concerned, we have had 2, one night admissions in 2 years for acute bronchiolitis where he required 3 hourly inhalers to help clear his chest, but we have Salbutamol inhalers at home now and start to administer it when Finn shows signs of a cold or cough and it helps keep potential hospitalisation at bay. Many ex-prem babies are in and out of hospital frequently throughout the year as they get sick with bronchiolitis, RSV and pneumonia and sadly this ongoing risk is increased exponentially the earlier your baby is born but also depending on the respiratory complications experienced by your child in their time in the NICU (weeks of ventilation support etc.) regardless of gestation. And so since Finn came home, we have had our share (a lot) of follow up appointments- opthamology (for ROP and vision in general), hearing, general paediatrics, kidneys (for damage from TPN), haemophilia (for poor clotting), neuro-developmental and lastly, surgical. But as our ‘ex-prem’ issue came to light with growth and feeding soon after discharge, lots of follow up has been ticked off the list while new referrals have been made. Our most important medical support now lies with gastroenterology, general surgery and allergy and the other appointments, now faded into the background, arise perhaps now once yearly as a necessary but minor inconvenience to be ticked off the list.
So we are relatively fortunate, feeding is our issue. I say fortunate because as I’ve explained in terms of life-impacting and long term implications it could have been so, so much worse. I have done my best to explain and make sense of Finn’s feeding issues in my last few posts, this will now become the ongoing focus of the blog as we navigate a way forwards. Sadly I was wrong last time about feeling we may have turned a corner, hence the gap in posting as life has become yet even more complicated. Now our NEC days are behind us, the NICU stories distant memories, we now have a new challenge to face which came as an unwanted Christmas present in the form of a rare diagnosis that might, actually, have happened anyway if Finn hadn’t been premature. Finn has been diagnosed with EOE. EOE, Eosinophillic Esophagitis is a chronic allergic inflammatory disease of the esophagus, it occurs when a type of white blood cell, the eosinophil, accumulates in great numbers in the esophagus causing inflammation and injury. This, in turn, makes eating difficult and uncomfortable resulting in frequent vomiting, difficulty swallowing, chronic pain and in children, food refusal, poor growth and weight loss. EOE as a diagnosis is relatively new and so it is not all that well researched or understood- there is no cure, but it is caused by an immune response to certain foods. These foods are not always those easily identified through standard allergy testing but instead any food can act as an EOE trigger and can only be identified by trial and error through diet elimination and repeated endoscopy (under general anaesthesia) to check on the eosinophil count present in the esophagus and by monitoring external symptoms. The disease is diagnosed with an eosinophil count of 15HPF and above, Finn’s count was 40HPF- not crazily high, but very high considering he is already on PPI medication and his known allergies are already eliminated from his diet- clearly we have a lot more work to do. A trigger can be anything from mushroom to beef, gluten or white potato or even environmental triggers such as pollen or pet dander (we have six dogs in our extended family). So, it will be a very lengthy and difficult process to reach a point of remission, but once this state is established, those with EOE can lead a healthy and normal life and feeding tubes are not required- once the triggers are eliminated, one should be asymptomatic and the eosinophil count, a healthy zero.
The struggle before this point has always been getting any medical professional to give an opinion as to exactly what the problem might be and we should have done an endoscopy many months ago but as always with babies, one needs to eliminate risk as much as possible. In the absence of any data to suggest anything more concrete, reflux has been mentioned frequently as the most likely cause for Finn’s vomiting and not wanting to eat, but everyone said that he would grow out of it by the time he was walking, and he didn’t. Allergies (of which Finn has many) were the next most logical explanation, but despite cutting out Finn’s known allergens and putting him on an elimination diet, despite the initial improvements, in fact, over time his nutritional status has actually become worse, and his oral intake has continually decreased- the removal of these key allergens saw a reduction in Finn’s vomiting, but not an eradication and it only makes his diet more narrow and less calorific.
The next answer from my endless research was post-traumatic food aversion- medical intervention as an acutely sick neonate (multiple tubes shoved down his throat, poking and prodding all over with needles and scalpels) and discomfort from allergies and reflux caused a fear of eating – a very real possibility that a lot of ex premature babies deal with and can lead to exclusive tube feeding whilst the children work with feeding therapists to overcome their fears.
In the months since the summer, post weaning from the NG tube where we seemed to have a period of rapid and dramatic progress, Finn was enjoying his food- he was shovelling it in, in fact (he’s learned the word “more”) and we optimistically awaited the next gastro appointment (consciously without having weighed him as a marker of progress) to see how he had managed to get on by himself since coming off the tube. Then it started again; the vomiting, the bronchiolitis, the tummy bug and throat infection that came out on the first day of our holiday to Barbados and again, over a period of a few weeks Finn had gained, maintained and then finally lost weight, all over again to knock him back to below his final weight on the tube, back into the state of malnutrition just as winter was getting underway. His eating journey had gone from 8 weeks in the summer receiving 100% of his nutrition, for the first time in his life, through elemental formula via tube, to eating everything and anything and lots of it, to a gradual decrease in interest and poorer and poorer intake in the weeks leading up to Christmas. This coincided yet again with concurrent increase in vomiting and obvious signs of discomfort. Something else, all this time, has been going on, something had been missed and I always had it there, fuelling my endless research, in the back of my mind.
Now it makes sense to me why we must have had a period of a few weeks of such excellent eating, why I thought we’d turned a corner! After 8 weeks on purely amino acid, elemental, hypoallergenic formula (Neocate Junior) and meeting Finn’s calorie requirement, he not only grew, but he wasn’t actually eating any other foods- therefore even though at this point we did not know Finn’s EOE diagnosis, because he was exclusively tube fed for a couple of months, he was on a total elimination diet and we had unwittingly removed all possible EOE triggers. It makes sense, then that in the couple of weeks where he began eating again, his esophagus (the eosinophil count) must have healed and dropped down to within a normal range only increasing again as Finn got back into normal oral eating habits and therefore coinciding with vomiting starting again and a gradual decrease in appetite until we had gone right back to where we started!
On returning from Barbados in the first week of December, I arranged a meeting with Finn’s gastroenterologist. On holiday, my husband and I discussed at length that we did not feel it was safe for Finn to continue without a feeding tube for caloric support- despite Finn’s and our best efforts, we are unable to keep the vomiting under control and we are powerless to increase his intake of food. He has got to a point where he is so thin that he is highly susceptible to illness, and when that illness hits he has no reserve to fight it off and maintain his weight, not forgetting the fact that when any child is ill, they don’t want to eat anyway and so we have simply witnessed Finn becoming thinner and more frail by the day. So after much deliberation and advice and consultation with different doctors we felt we had reached the point where it was the right decision for Finn undergo surgery for a gastrostomy tube- at least for use to get him caught up in growth, and to assist us in keeping Finn well while we and the team continued to investigate the cause for his poor growth and poor intake of food. Within fewer than 10 days we had an urgent slot at Great Ormond Street and it was decided that whist under the anaesthesia, and because a PEG tube is inserted by endoscopy- Finn’s surgeon, as part of the next line of investigation, would take biopsies from Finn’s esophagus- it was these biopsies which finally gave our answer just last week, an EOE diagnosis two days before Christmas and 2 months before Finn’s 2nd birthday.
It was not an easy decision, a year of failing to thrive in the making, to put our malnourished (and sick with bronchiolitis, heightening risk), trusting, walking, talking, loving toddler through his sixth anaesthesia- stroking his little face and holding his tiny body as he drifted into a heavy, dangerous and artificial sleep. It is his third significant abdominal surgery- another scar added to his already-covered torso, but we felt we had no choice and it has been getting to a point of begging for someone to do something, that we might lose him without significant help to turn a corner and there will, sadly, be more surgeries to come.
Two weeks in, and the tube has come rather now as a blessing, a tube on his tummy going through his abdominal wall directly into his stomach- not very pretty but hidden under his clothes, it’ll help him thrive while only now can we work to undo the damage of countless interventions, misdiagnoses and almost two years of pain, vomiting and inflammation. The initial round of treatment begins now, Finn has been referred for feeding therapy and he is being trialled on a maximum PPI dose of Omeprazole before we do a repeated scope to check if his eosinophil count has gone down and responded to the medication. If not then we will begin, one by one, further food elimination and a potential round of oral steroids to act as a kind of cream for the esophagus until he scopes ‘clean’. There will be setbacks, I’m sure, but as we enter 2018 we now have an answer, and a focus.