This story is a member’s personal experience and opinion, and is part of their healing process. Please be aware that some of the stories on Crying Over Spilt Milk are of more severe or complicated cases of Gastric Reflux. Serious or complicated cases of Gastric Reflux are rare. If you think you may be disturbed by some content, please visit this page before deciding to read further: Infant Gastric Reflux Stories
Jayden was born on 26 August 2000 after being induced at 38 weeks. For the first two weeks of Jayden’s life he was the dream baby, he slept and fed like an angel and though he was quite a spilly baby, he was not overly unsettled. When he hit two weeks (actually on his due date) he screamed solidly for five hours. After a week of this the midwife recommended we try Gaviscon. Two days later we saw our doctor who increased the Gaviscon and also recommended we use Infacol with every feed to help with “colic”.
When Jayden was about 6 weeks old (after a particularly unsettled day), he started choking and gagging after a feed, and went blue around his lips, mouth and cheeks. He stopped breathing but re-started when I moved him around. He remained very pale and still a little blue for the next 15 minutes or so, and then when I lay him down to change his nappy his eyes rolled back and he had a convulsion, and then was very floppy and unresponsive for about five minutes. We went straight down to our doctors who immediately had us admitted to hospital, where we stayed for two night’s observation. They diagnosed reflux and gave us advice on the various reflux cares (raising the mattress etc) and said to again increase the Gaviscon. At nine weeks I had just finished feeding him (breastfeeding) and was burping him over my shoulder. I thought he had gone to sleep but when I brought him forward he was blue and had stopped breathing again. This time I had to perform CPR on him to re-start his breathing and then he did a major projectile vomit. His vomiting had been increasing over the last couple of weeks, and he was gagging and choking often. An ambulance was called and we spent the next two weeks in hospital. They did lots of tests which also revealed that he had severe gastric reflux and was also having reflux related sleep apnoeas. Ranitidine and Cisapride were added, and he was to be hooked up to an apnoea monitor 24 hours a day. Two days after returning home he had another major episode; this time vomiting blood. He was put back in hospital on a drip and was kept “nil by mouth” to rest his stomach and oesophagus. We slowly started giving small amounts of expressed breast milk via a bottle. He was also on IV Omeprazole and Cisapride. The decision was made to have a Nissen fundoplication at 12 weeks!
Everything appeared to go really well for the first ten days post surgery, and then he simply stopped feeding. We tried to persevere for several weeks giving him expressed breast milk via a bottle so we could keep track of how much he was drinking, but his weight was steadily dropping, so they ended up putting in a naso-gastric tube. I had always wanted to breastfeed until at least 12 months as I had done with my daughter, so I continued expressing milk to feed him via the tube. After another six weeks (most of this spent in hospital) and him becoming more and more unsettled, and they thought he was refluxing around the tube, he again underwent surgery to have a gastrostomy feeding tube inserted.
I persevered with expressing until he was six months old, then exhaustion really set in and we switched to formula. I just found between looking after Jayden, expressing and then tube feeding I was having no time to spend with my daughter also. Jayden ended up being tube fed until he was 22 months old. Finally managed to get him to start taking some solid foods (very pureed) at around 11 months, but it was a very slow process! At 12 months his normal baby formula was changed to Pediasure and Duocal added to increase his calorie intake. It didn’t take long for us to find out he had an intolerance to the soy base in Pediasure, so this was changed to Nutrini.
When he was just over a year we were referred to the Champion Centre at Burwood Hospital (a specialist early intervention centre for children with developmental delays/disabilities). We were initially referred to the feeding clinic but were soon integrated into a developmental clinic also, and he was given a formal diagnosis of global developmental delay. Jayden just turned three last week and still attends a fortnightly two-hour session at the centre, and sees a speech-language teacher, occupational therapist, a musical therapist and an early-intervention teacher. Unfortunately, Jayden started refluxing again about six months ago and his feeding has steadily been decreasing, and his weight is also dropping off. Sleep is just not a happening thing with him waking screaming sometimes five to six times a night. His poor wee voice is also getting croakier by the day. He is currently on 30mg Losec. daily and 10mls of Gaviscon 3 times a day. Due to the fact he is steadily deteriorating again and has also started vomiting blood again, he is going to be admitted to Christchurch Hospital on Sept 23 and will be having an endoscopy to check exactly where the bleeding is coming from, and another laparoscopic Nissen fundoplication. I am devastated he is going to have to go through this surgery again, but praying that it will not this time lead to complications such as the severe oral aversion he suffered from last time.
Written September 2003
UPDATE– January 2004
On September 23 Jayden went into hospital to have his Nissen fundoplication re-done. At the same time they performed an endoscopy and the ENT specialist drained his ears and inserted a second set of grommets. It was discovered that he has nodules on his vocal cords so he will possibly need more surgery for this in the future. They also found that his previous Nissen hadn’t completely unraveled as originally thought, but had only come undone on one side. When Jayden came back from surgery he was quite heavily sedated and had a fluids drip plus a morphine infusion and a naso-gastric tube. For the first 30 hours post-op he was very sleepy but then seemed to bounce back really quickly and hasn’t looked back since!! His speech and behaviour have improved significantly as has his eating and in general he is a much happier little boy.
UPDATE – May 2008
While Jayden’s general health and behaviour increased quickly after his last surgery at age three, he struggled with massive wind problems. He couldn’t burp and it took a long time to pass through the other end!! We had several times where we needed to go into the hospital so that could put a naso-gastric tube in just to give some relief and release some wind. He also had a lot of trouble with choking, especially fluids, so we had to be very careful with textures. The dietician had advised to just let him eat anything he wanted to eat. Unfortunately it also didn’t take long for his fundo to start to loosen to the point that he was refluxing again and needed to go back on medications.
We had tried removing foods from his diet when he was younger but there had been no change in his system, and seeing as it wasn’t that long since he’d been on a feeding tube the dietician had advised to just let him eat anything he wanted. Now that he was older and because we were trying to avoid another fundo, we took him off dairy, gluten and soy for about six months, but again with no improvement and in fact he had to have his medications increased and was now on 60mg Losec.
A barium swallow showed that Jayden was once again refluxing, plus it also showed dismotility problems both with food entering and leaving the stomach. He was put on Erythromycin as a motility drug but had to stop that fairly quickly as he was getting major stomach cramps. Jayden’s surgeon, who has been looking after Jayden since he was nine-weeks-old recommended that seeing as medication wasn’t working, we’d ruled out food issues etc etc that Jayden needed yet another fundo. We discussed all our options, none of which were good, but finally made the decision to have yet another fundo. This time however, due to the wind and bloating issues he had post surgery last time and also his tendency to stop feeding after a fundo, we decided to have a mickey feeding button placed at the same time as the fundo surgery. As our surgeon said, if he didn’t end up using it, fantastic as they are easy to take out, but if they didn’t put one in and he needed it then he would need another general anaesthetic.
In December 2006, at age six years, Jayden was once again admitted. After the surgery and before we were allowed into recovery, the surgeon came to see us. He said the surgery had gone well, again the fundo hadn’t completely unraveled but had come undone enough to be causing Jayden to reflux again. He showed us some photos of what it had all looked like (Blah!!!!), and also said to us that the surgery had caused him a few gray hairs as because of the number of times Jayden’s had the surgery, his liver had moved and attached itself to the side of the stomach, and while trying to detach it enough to fix the fundo and not damage the liver, he had nearly perforated the stomach. Because of this, he said if Jayden starts refluxing badly again another fundo is not going to be possible due to massive scar tissue and the state of his insides.
We seemed to be waiting forever to be called into recovery so in the end we just went in and asked if we could see him. For some reason this surgery had knocked him around more than his others, and his oxygen levels were low and he didn’t want to wake up. Eventually he was moved to the High Dependency Unit and was kept on oxygen overnight. He also had a morphine infusion running and a naso-gastric tube in which was supposed to be keeping his tummy empty…but it didn’t take him long to pull it out, it was gone before he had even woken up!! So, instead they hooked up the gastrostomy tube to drain his stomach – that’s what was suppose to happen in the first place, we had been told he wouldn’t have an naso-gastric tube this time. Jayden moved back to the ward just before lunch the next day. He was still on the morphine infusion plus getting top-ups when needed. He was in a lot of pain both from the fundo and also from the new gastrostomy tube, no amount of convincing from us could get him up to even try and stand beside his bed. It took him about three days to start cautiously moving around, and even then when we came home from the hospital we were given a child’s wheelchair to help him to move around a little easier and also for when we needed to go out places as he couldn’t walk long distances. Even with tube feeding, he lost a lot weight and even now, is still all skin and bones!
It turned out that the decision to have the gastrostomy was the right one. Jayden was extremely bloated, so we were able to vent the tube to relieve some of that. He also wasn’t eating and for the next six months he was partially tube fed. The tube coming out once it wasn’t needed turned into another drama, as although the skin closed over the top, it herniated underneath, so he had to have more surgery to fix that.
Which brings us to now … Jayden is now seven-and-a-half-years, and he is refluxing again/still. He is also having motility issues again so is back on 30mg Losec, Lactulose and Mylanta tablets. At the moment his reflux is not under control and with constipation issues on top of it he is getting a lot of sore tummies and lots of “sickey burps” and headaches. We know the fundo must still be fairly tight as he cannot vomit at all, but its obviously loose enough for him to be refluxing.We are waiting to see the surgeon again to find out what our next step is. He told us after the last surgery that he felt we were still missing something withJayden but only time will tell. Another fundo would be extremely dangerous due to the stomach wall being so thin and all the scar tissue around, but we really didn’t discuss what would happen if we got back into the situation of the medication not doing what it should – I guess I didn’t want to believe that the reflux monster would come back again!!!
Jayden is struggling along at school, due to his Global Developmental Delays he gets a lot of assistance with two school teacher aides and a Supplementary Support Teacher working with him in either one-to-one sessions or alongside him in the classroom.. We are also waiting for him to have another assessment done for Specific Learning Difficulties.
© Lynda and Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust 17/01/2003 – 2008.