How did we get here…..i’m not going to harp on about the background to our family and Seth’s illness. I will keep it as short and interesting as I can….but its complicated…..so bare with me!
Seth was born in Feb 2010 on the day before his due date. The labour was short for a first labour (7 hours) and unremarkable. He was here. The baby that had been a surprise to me and his daddy had arrived. This perfect little bundle weighing 6lb 14oz. The first night he fed like a trooper keeping me awake whilst daddy went home. We were allowed to go home the next day after he had been through the standard newborn checks. All was well.
For the first 2 weeks everything went smoothly. I was breast feeding and he was doing well with it. He didn’t lose weight just started piling on the ounces straight away. Easy!!!…..until the crying….o my god the crying! Colic. Any parent who has had a child with colic will attempt to tell you how the constant crying makes your ears, brain and heart hurt. This coupled with lack of sleep makes for an unforgettable experience. Probably not the ones all the baby books are describing…but unforgettable all the same!
At around the same time Seth began to vomit his milk, The health visitor suggested a milk intolerance but as he was breast fed it was unlikely that there was a lot of lactose in the milk and instead considered it to be reflux. So we started with the infant gaviscon. This vomit was projectile, and generally all down me (and on one occasion all over my laptop!). It flew out of his mouth at great speed and in large amounts.
He was also constipated. Something most new mothers worry about as their baby may not poo every day. But then normally you will experience what is known to me as a ‘poonami’. A flow of yellow mousse which often spill out of every possibly gap in the nappy exploring up the babies back and down their legs, staining their perfectly cute brand new (and probably pale coloured) vest and sleep suit. O the joy. However, this is not constipation, this is just a baby. Seth was actually consitpated. Not pooing, and being really uncomfortable with it, pulling his legs up, crying, trying to go and nothing coming out. When he did eventually go a hard yellow pellet would pass. The first doctor was not convinced and advised us to try baby massage. However, the second doctor soon prescribed lactulose when he managed to go through the motions in her office and she saw the extent of his discomfort.
At this stage Seth is a mighty 5 weeks old, the doctors had prescribed him lactose free formula and i had to stop feeding him myself as he was too sensitive for even breast milk. So much for breast is best!!! The next couple of weeks he began to poo, with a large amount of lactulose, but continued to vomit. His milk was changed again, this time to a protein free milk prescribed by the GP. His weight gain started to slow and he was beginning to fall down the centiles, and by 10 weeks old his poo had changed to be very loose and extremely smelly. I don’t think my husband or i will ever be able to eat hollandaise sauce again!
Because of all of this Seth was admitted to the local hospital at which he was tested for various things, including his immune system (just not all of it). I remember being really worried he had leukaemia. They had tested his neutrophils (white blood cells) which he had. But didn’t test lymphocytes, which he had none of (lymphocytes are made up of T and B cells. T cells are like the management – they tell the immune system what to attack. B cells are your anti bodies, they fight the infection but only if T cells tell them too). Their main concern was his lack of weight gain and they wanted to force feed him through an NG tube. But he had not poo’d in 4 days. They gave him a suppository, which worked and then he ate. So was allowed to go home.
So this went on. We also noticed that his belly button had failed to heal properly, it looked like raw meat (ugh). But again doctors weren’t concerned. I was told to stop taking him to be weighed every week and that there was nothing wrong with my baby. By this stage I think everyone thought I was an over worried first time mum, and too be honest I thought it too. Where was the magic that everyone goes on about?!!! I thought. I was just not cut out for it.
When he was 5 months old he coughed up a bit of what I thought looked like phlegm, so i took him to the GP who listened to his chest and said there was nothing wrong with him. 3 days later i noticed he had swollen genitals so we took him to A&E (as it was midnight, and i had, had enough of being fobbed of that there was nothing wrong). We were left waiting for 5 hours in the waiting room before he was seen. The doctor said he was worried about him, but did not admit him. The nurse took his vitals, but couldn’t find a O2 monitor for a child so looked at him and said he looked fine to her (at the time i had no clue as to the significance of a SATs monitor and O2 levels).
One week later, after a particularly hard week of winging and crying and being difficult Seth had a temperature of 37.4. We took him to the out of hours doctor (it was a Sunday) and upon arrival the doctor was concerned and checked his O2 level which was 72. He immediately put him on oxygen and then phoned an ambulance. On the way to the ambulance we had to take the O2 mask off him, he went blue.
Then its all a bit of a blur time wise, but over the next few hours Seth struggled to breathe more and more and the hospital struggled to maintain his SATs. At one point his level went down to 22, and he went blue. Alarms went off and doctors came running in from god knows where. They revived him and took my baby away to be intubated. He was being transferred to intensive care at the children hospital 50 minutes away. We were allowed to see him a few hours later when the intensive care team arrived to transfer him. He was in a forced coma. We were told not to follow the ambulance and that we would be able to see him when we arrived.
When we arrived, Seth was not stable enough for us to see him until 2 hours later. We got to see him for a minute before we had to leave again as they were struggling to get a line in to take bloods and give medicine. The consultant said to me “you have a very sick boy, he is just holding on”. He made me feel like it was my fault. That he had a chest infection that I had not tried to get treated. 4 days later, Seth was still fighting (i will talk about this in my next post), but we were told tests were being done on his immunity. The nurse told me “you don’t want it to be that”. The next day we were pulled into a meeting with a consultant, an immunology consultant who had tears in his eyes when he told us that our boy had Severe Combined Immune Difficiancy and would not live to his 2nd birthday if he did not have a bone marrow transplant.