Leo’s Story

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

Leo was a very much wanted pregnancy and came into the world via caesarean section in August 2004. He was born a healthy 7lb 4oz but by eight weeks he was only 9lb 1oz, unlike my first son who was 14lb 3oz at the same age. My gut told me something wasn’t quite right, but everybody told me to stop comparing my two children.

leo1The first eight weeks of Leo’s life were quite trouble free, but at eight weeks it was like someone flicked a switch. Leo, who had been a very placid baby, started to scream and scream and scream. I look back now and realise I missed all the signs and because I was a second time mum I thought, “I have done this before, I should know how to do this”. I was told by one health professional that it was “colic” and that nothing could help him so I believed I had to “deal with it”. I felt that it was my fault and problem so I shouldn’t trouble anyone else with my issues. If nothing else I would say to others in this situation “IT IS NOT YOUR FAULT. THERE ARE PEOPLE OUT THERE TO HELP YOU, and DO NOT LET YOURSELF OR CHILD SUFFER IN SILENCE”.

Leo breastfed from birth, but I always referred to him as my fast efficient feeder as he was always quick to feed, and would come off licking his lips and looking satisfied. He also slept well, but when he was awake the whole neighbourhood knew about it. Going out was hard because of his screaming I had people comment all the time like: “the baby needs a feed”, “the baby needs a sleep”, and “the baby’s got wind”. I felt judged by others and thought that I wasn’t doing a very good job as a mother. Also it was hard at home to juggle things with two babies. My first Brodie was now only 21 months and when Leo had a screaming match he would get upset too. Many times the three of us would be crying all at once. I felt such a failure.

For six weeks, I tried to do things by myself, but it was too much. I went to a doctor (our own was on holiday for two weeks) who said Leo had “reflux” and gave us Zantac. Leo was violently ill on this, so we went back and saw another doctor who gave us Losec. Even after ten days it madeleo2 no difference so I made an appointment with our doctor when he was back from holiday. He took one look at Leo and said “We need to get him to hospital”. From there things happened so fast I went into autopilot. I was actually quite numb with shock, all while trying to stay strong for my child.

We arrived at Ward 53 at Waikato Hospital where theyimmediately put a nasogastric tube down Leo’s nose to get him hydrated. They think he had been staving himself for three weeks. He was grossly underweight at 10lb 5oz for his age of 16 weeks, his body was starting to shut down and he was non responsive. The guilt was horrendous. It is still something I struggle with now and again as I look at photos I can’t believe I didn’t see how sick he was. That first day in hospital we had test after test including ultrasounds and a CT scan. Luckily the tests were clear. They found he had severe GORD (gastro-oesophageal reflux disease) and was FTT (Failure to Thrive). He had associated food (breastmilk) with pain, so had decided to give up feeding. He had always been a good sleeper but now I realised it was because he was too lethargic to do anything.

We stayed in hospital for two weeks, including being at the Mothercraft Unit, where I learnt to use the medical equipment and all his medications. We went home on a four hour feeding routine, which required me to set my alarm and feed Leo, who would promptly vomit it back up. (I always joke that you haven’t seen a projectile vomiter until they can reach two metres.) The force and lack of warning always amazed me. Tube feeding 100ml took about 45-60 minutes then I would express the next feed and clean up, and go back to bed two hours later, get two hours sleep and then do the same thing all over again. I was very staunch about continuing to breast feed. leo3Although he wouldn’t drink off me I expressed day and night to keep my supply up. It was a big ask of myself, but looking back I’m really glad I did.

We continued on that very tiresome routine of feeds and vomiting for six weeks until I collapsed in exhaustion and depression. Leo (five months) and I went back to the hospital. For this I am eternally grateful to our paediatrician Dr Eleanor Carmichael who admitted us back into Ward 53 where we stayed for another two weeks to sort out Leo’s inability to stomach any liquid, his weight loss and medications. Again his medications were increased and his liquid intake was reduced. Lumber puncture tests were done as Leo had a pungent “toxic” smell to make sure his metabolic system was working all right. It was. Again we spent another week in Mothercraft and decreased his fluid intake hoping to decrease his vomiting.

For the most part of 13 months Leo had weekly weighs at our local hospital and monthly appointments with his paediatrician at Waikato Hospital. With each weigh session came the same anxiety and moment of breath holding to see if he had gained or lost weight for the week/month. I look leo4back now and realise I worried too much about what other people thought. I felt people would judge me and think “how could a mother let her baby get this sick”. I also felt I had to explain why he was so little and with a tube. Now days if anyone comments on his size and how skinny he is, I tell them he was a premature baby. There is nothing they can reply to that, whereas if I got into the fact that he was a Failure to Thrive, most can not understand or have never heard of a baby starving themselves, and the would offer advise how to “cure” his reflux. I had to explain endlessly that he had GORD and was not “fixed” by feeding him more upright.

Despite his “Failure to Thrive” Leo crawled at nine months and walked at 11-and-a-half months old. Developmentally he is not delayed in anyway which was always a concern of mine due to his size and lack of growth. He had his first solids at nine-and-a-half months and basically lived on custard until he was 15 months old. Leo had a feeding machine that he was fed at night on. He had started breastfeeding again occasionally from nine months and became more regular with this from around 11 months of age. He continued to breastfeed till he was 22 months old.

At 12-and-a-half months old Leo was rushed to hospital with pneumonia. He had aspirated on his own vomit and after three days we were released. Pneumonia wasn’t the only ongoing problem we had. Leo had a lot of ear infections, with a total of seven burst eardrums. This was because the vomit would force its way into the ear canals when he vomited. Unfortunately, because of his lack of size we had to wait till he was seven kilograms before they would give him grommets. They had to intubate him because of his vomiting as the theatre staff could not risk him vomiting in theatre. leo5He finally got to seven kilograms at 14 months old, and Leo had another few days in hospital to have grommets put in. This made a huge difference, and I have since learnt that reflux and ear infections tend to go hand-in-hand.

It changed our lives when Leo’s Tube came out when he was 17 months old after over a year in. It also was a happy day when after 21 months Leo finally started to sleep through the night, as his reflux started to settle down. He kept breastfeeding until he was 22 months, which I am very proud of but it also makes me laugh how stubborn we both are. Although we are still underleo6 hospital care at two years six months, Leo is doing fine. His weight is monitored and at two years old he was a healthy 9.8 kg and at last weigh he had put on nearly one kg in six months.

It has been a very long and hard journey. It’s funny, it is harder to think and write about these things now after they have happened. You do what you have to. It’s only when you slow down that you realise just what you have done, and that’s when the emotion of it all hits you.

Mums give yourself credit. It is hard, and some days it is really, really hard. Allow yourself to cry, to be angry and to be sad, but also allow yourself to reach out and join a group where they can understand, help and give you support. For me that was Playcentre.

To Leo’s paediatrician – thank you for saving Leo’s life and mine. You did so much with so much understanding and empathy.

To the wonderful nurses at Waikato Hospital Ward 52 & 53, and mostly the Mothercraft Unit – THANK YOU. I want to say so much more than that but words can’t express what your support meant to me during one of the hardest times of Leo’s and my lives.

To all the mum’s at Matamata Playcentre – thank you for being a great bunch. Just the company was enough.

To Brodie – thank you for being a great big brother. Your good nature meant you showed great empathy and love towards Leo.

leo7Mostly to my husband Brendon – thank you for understanding, your patience and help. I write like this was Leo’s and my journey – but it was yours too Brendon. You helped clean up vomit countless times, you held my hand as Leo entered the operating room and you held me many a time as I cried and you cried too.

© Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust and Kaye May 2007.

Update of Leo – January 2008

Although, generally healthy, Leo’s weight and growth continued at a slower than normal rate and by 3 years old Leo only weighed a slight 11kg.

Leo continued to have lots of ear infections and perforations, his doctor became alarmed at his increase of tonsillitis as each infection would affect his weight and general health. We were added to the waiting list to be assessed at Waikato Hospital. It was around this stage that we became aware of Leo suffering from sleep apneia, where during sleep he would stop breathing (sometimes up to 45 seconds, that we witnessed), and his snoring became excessive.

After waiting six months and now at the age of 3 years 3 months we saw the ENT (ear, nose & throat) specialist. It was decided Leo was in urgent need of another operation to remove his tonsils and adenoids, insert another set of grommets and give a sinus scrape. The operation was set for 1 week later.

We were meant to stay in hospital for 1 night but this turned into 3 as he stopped breathing twice during the night (sounding the alarms on his machine) and had problems sustaining his blood pressure.

3 months later, we have noticed a HUGE difference in Leo; his body mass increase is very noticeable. He has gained weight and grown in height –LeosStory_clip_image002 moving from size 1 clothing to size 2 (not bad for a 3 and half year old, hehe). Although, his set of grommets only lasted 3 and 9 weeks, we considered the operation was a great success.

During his last operation in March 2008, it was discovered that Leo has lost his hearing in his left ear because of an inward blown eardrum taking out some inner ear structure. With the doctors we are currently looking at alternatives including a hearing aid and major inner ear reconstruction surgery.

Leo will be 4 next month and continues to live life with reflux, it is only because of his reflux that he continues to get ear infections and at least once a week will vomit for no particular reason but we have a laugh when he does what we call “smelly burbs” and is generally a happy healthy child.

© Crying Over Spilt Milk Gastric Reflux Support Network New Zealand for Parents of Infants and Children Charitable Trust and Kaye July 2008.