Abbey had no idea that her new baby’s jaundice was anything to be concerned about as she explains here.
My son Jack was born on March 30th 2016. He was jaundiced from the start, but everyone just thought it was normal newborn jaundice. Also, at that time we had some other difficulties trying to get him an MRI scan for birthmarks (to rule out epilepsy and other conditions) so we were most concerned about that.
We did, however, get referred to a prolonged jaundice clinic. And on the second appointment there the doctor told me; “There is something seriously wrong with his liver”. I had been repeatedly asking healthcare professionals why his poos were green but kept being told this was normal, so this was quite a shock to hear!
We were immediately referred to Birmingham Children’s Hospital where Jack was diagnosed with alpha-1-antitrypsin deficiency when he was 10 weeks old. It was expected, however, that this would be managed with nutrition and no surgery required. So, it was a real shock when, on our first follow up appointment in Birmingham, when Jack was four months old, that the Consultant had to inform me he needed a liver transplant. I think he was almost as shocked as us at how quickly he had deteriorated.
Jack was admitted for transplant assessment a few weeks later. We expected to be there for five days to go through the information and consent process. Unfortunately, he was so unwell and deteriorating faster than they had ever seen a child with alpha-1, they wouldn’t let us go home. After being placed on the urgent list for transplant he received a liver within 11days.
I remember the on- call surgeon coming and introducing himself one evening at the beginning of his shift. I thought: “He’s very thorough but we won’t be seeing him tonight as people wait ages for donor organs”. How wrong was I when a few hours later the nurse came to inform us they had a liver for Jack! He went to theatre that night- he was not quite six months old. Handing over our baby to complete strangers, knowing he may not survive the operation, was the hardest thing we’ve ever had to do. We occasionally have flashbacks of those impossibly hard days and weeks.
Thankfully his transplant was successful and when we saw him in PICU the next morning he was no longer yellow (we had never seen him not yellow!). A complete miracle!
Since then, Jack has had a few hospital admissions with infections, being more vulnerable due to the immunosuppressants. But overall, he has been incredibly healthy and stable, for which we are obviously incredibly grateful. People who didn’t know him as a baby won’t think of him as a child with a serious medical condition because he just gets on and enjoys life like most other eight-year-olds. He is truly amazing! But as his his parents, we remember every detail of what he’s been through although we’re so grateful that he doesn’t. We hope that his donor family know that they saved our child’s life. We can never thank them enough.
