I’m afraid this blog is going to be a little different for a while, as I will likely be using it mostly to provide updates for friends and family on little Felix. This is the best and easiest way I know to keep loved ones up to date on our baby’s condition. I hope to be as thorough as possible, both for those who love him and are concerned about his well-being, and so that those who are the praying type know what, specifically, to pray for.
As most of you know, last Monday (December 3), when Felix was only 12 days old, I got called from the newborn screening center at the Victoria Hospital in London, letting me know that Felix’s blood test got flagged for a rare, life-threatening disease called SCID — severe combined immune deficiency. We were called in to get him re-tested two days later, since false positives are very common. So we made the two-hour drive out to get him assessed and to have his blood taken. He appeared perfectly healthy, aside from some oral thrush, which is comon in babies, and a mild cough.
By the time we had arrived back home, we were called again — the initial results seemed to confirm the diagnosis. We were asked to return first thing next morning. We were warned that we might end up being admitted and have to stay the night.
So we left Lydia with grandparents and made the trip back out to London with a change of clothes and toothbrushes. As soon as we arrived, the bad news started rolling in. It hasn’t stopped.
We are now admitted here long-term. We have been here a week, which is just the start. We have been told that best-case scenario, we will be in hospital at least for the next three months, but very likely it will be much longer.
The diagnosis has been confirmed. The good news is that the disease is treatable, possibly curable.
As I’ve mentioned, this genetic disorder affects Felix’ immune system — he is unable to produce t-lymphocytes, which are necessary to fight infection. In other words, he has no immune system. Any bacteria or virus that he gets exposed to can be life-threatening. So far, he’s done quite well, though recently they’ve identified a bacterial infection in his bladder and an unidentified infection in his lungs. They are treating both with antibiotics until they can learn more.
Fortunately, he doesn’t seem to be suffering too much as a result of these infections besides the cough. The greatest source of suffering comes from the constant testing. He gets blood work every day, and has had numerous catheters, a spinal tap, a lung swab that required sedation, three x-rays, and an ultrasound. He is due for another ultrasound, more blood work, and a catheter dye test tomorrow.
Meanwhile, to prevent any exposure to pathogens, Felix is in strict isolation in a sterile environment. To see him, we must wear masks, gloves, and gowns. I undersand that this will be the case the entire time we are in hospital.
Felix’s absolute best bet for recovery is a bone marrow transplant. Ben, Lydia and I have gotten our blood taken to see if any of us is a match. If we are, and the transplant is successful, he will essentially be cured. If we are not, there are other treatments available, though they are expensive and life-long.
My two greatest prayer requests are these:
1. That none of his current infections spread or put him in serious danger until he can get treated; and that he doesn’t develop anything new.
2. That one of us is a match for a transplant. Lydia is the most likely match, and the odds are only 25%; Ben and I are even less likely.
Thanks so much for all your love and support. It has meant more than you can know. I will try to keep you updated as I can.