Talking About Going Home (And a Big Fat Prayer Request)

We had an unusual day this week: the Infectious Diseases doctor — and the main doctor overseeing Felix’s care — came with us on the two-hour drive home to check out our house. It was my first time seeing my home since the beginning of December (almost four months).

We might be able to take him home soon, but we have to make sure our house is safe for him. The enzyme injections have begun to help him build up a bit of an immune system but it’s not even close to normal yet. He’ll still be in isolation until gene therapy (we’re still hoping for June), and then for several months after that as well. Lydia won’t be living with us, since she’s a swirling vector of germs. We have to be very careful not to expose him to viruses, bacteria, fungi or or spores from the outside world.

It was an encouraging visit. Our doctor thinks that as long as we keep the windows closed, don’t use any fans, keep his area scrupulously clean, and take the appropriate precautions before handling him (sanitizing our hands, etc), we can keep him on the main floor of our house. We can’t accept any visitors. We have to remove anything that will gather or stir up dust. We have to routinely sanitize all of his toys. We’ll also have to boil any water used for feeding or bathing him. Things like that.

I only cried when she told us we couldn’t use cloth diapers or the special baby hammock we’d bought him. I wasn’t surprised, but I was still sad.

If he continues to do as well as he has been doing, we might be able to take him home in a few weeks. We just have to work out how things will work with visiting nurses, hospital visits, etc. He’ll still have to get regular medicines through his central line. He’ll still get most of his nutrition through the NG tube, but we can take care of that.

I’m terrified and excited. There are so many ways an immune-deficient person can get sick that I never could have imagined. Who knew that houseplants could be dangerous? Or a ceiling fan? I’m so scared something will happen and it will be our fault. But I’m also looking forward to sleeping in my own bed, cooking in my own kitchen, and being only ten minutes away from Lydia. Just being able to feel a little more normal again.

And while I’m talking about my anxieties, I want to articulate my hugest prayer request:

Please pray that Felix can remain free of infection or anything else that might exclude him from gene therapy. Pray that he makes it to gene therapy and that it works, restoring his immune system, so he can live a healthy life.

Felix needs to be in perfect condition to be eligible for gene therapy. Since it’s experimental, the doctors only want to test it on the best possible candidates. They want the best possible outcomes so that it can be approved as a therapy. That means he needs properly-functioning organs (including his brain) and he can’t have any active infections. He has already gotten scarily close to losing eligibility when we discovered he had CMV, and again when he started having seizures. My greatest fear is that he will lose his spot and lose his best chance at recovery.

To be honest, it feels like all my previous prayer requests have fallen flat so far (i.e. that his initial screening would prove to be a false positive; that Lydia would be a donor match; that he wouldn’t get any viruses; etc), but I just don’t know what else to do. Prayer is all I have.

Thanks again for all your love and support.

Update on Felix: Down and Then Up Again

felix with EEG

Sorry for my absence lately. I have a hard time writing updates when we’re in the midst of a crisis. And last week was another one of those nightmare weeks. But right now we’re okay again.

I was becoming increasingly frustrated that Felix wasn’t taking the bottle. We’d been forced to start with the NG tube because his breathing was so bad he could hardly drink without aspirating; but his lungs had since cleared up completely and there was no longer any clinical reason to keep going with the tube. Except for the fact that he couldn’t remember sucking any more. He’d been exclusively tube-fed for over a month and had completely lost interest in oral feeding. Even if he’d wanted to, he no longer had the skills.

I asked for advice from friends, did some research, and concluded that Felix needed to experience hunger to trigger his sucking reflex. So I talked to our team of doctors and they agreed to let us withhold food for a stretch of time to see if that would encourage him to start bottle-feeding again. We were going to stay with him round the clock and try bottling if he ever showed any interest. Ben and I made up beds in his room and got ready for a long night.

He’d gone without food for nine hours and I was trying to get him to take his bedtime bottle when the first seizure hit. His eyes went glassy, his face turned white, and his body went limp in my arms. Ben called for the nurse and she rushed in. Within a  few moments Felix revived — his colour came back and he was moving and looking around again.

Unfortunately, another seizure happened a few minutes later. And then again a few minutes after that.

Over the next few hours he had fifteen seizure-like episodes. Even when he revived he wasn’t fully there. His eyes stared out into the night. It was absolutely horrifying to look into my child’s eyes and not see him there.

I lost my mind. I was so afraid that he’d gotten an infection in his brain and this was it. In order to be eligible for gene therapy — his best hope for long-term survival — he needs to remain free of infections. I was convinced that he was either dying or he was losing his one chance at a long life.

Eventually, as one mysterious episode continued to follow the last, I curled up on my bed, covered myself with blankets as nurses and doctors came in and out of the room, and just blacked out for a few hours. I didn’t know if I was going to survive this.

At some point he stopped having seizures and the staff let him (and us) rest.

The whole next day Felix was lethargic and unfocused. He was equipped with an EEG (as seen above) to have his brain patterns tracked, to help us understand what had happened. Our doctors were somber. One of them prayed over him with tears in her eyes. We didn’t know what was going to happen to him.

It took Felix several days to recover from that night. It took me even longer.

The primary doctor in charge of Felix’s care did some intense research and discovered that children with ADA-SCID tend to be prone to seizures when placed under stress. Turns out, starvation is a major stressor. (Again, though, this information was hard to find since the condition is so rare and the survivors so few.)

He had a few more episodes two days later which sent me into another spiral of agony.

But for the last few days, he’s back to his old self.

There is no infection. He’s just as eligible for gene therapy as he was before the seizures. It’s possible that Felix will deal with seizures for the rest of his life, though thankfully there haven’t been any more this week. And though they’re stressful and exhausting, seizures aren’t harmful in and of themselves.

And in fact, things have recently taken a turn for the better: on Thursday night Felix started to suck on his bottle!

We have no idea what changed. For weeks we’d been trying without success. He simply had no response to the bottle in his mouth. And now : boom! Sucking!

It still takes him an hour to get a fraction of what he needs, but the fact that he’s taking in anything at all is so encouraging to me. He might never bottle full-time, but I’m just so happy he’s able to take some pleasure from oral feeding.

So here we are again. Worried, anxious, hopeful.


(PS: He yanked out his feeding tube one morning — hence the reason we usually keep mitts on his hands, as in the photo above — so we had a few hours of a tube-free Felix. Doesn’t he look fabulous? I dream of a day when his face looks like this for good!)

felix 3 1/2 months


Unnatural Healing

unnatural healing

Felix’s disorder has put me in a really weird place.

As you know, I’m a huge advocate for natural, holistic healing. By that I generally mean healing that is done without pharmaceuticals. I believe there is healing power in things like chiropractic care, meditation, food and nutrition, aromatherapy, herbs, essential oils, etc. Pharmaceuticals are problematic because they tend to be narrowly focused on symptoms rather than the underlying causes of an illness. They tend not to take the whole person into account. They inevitably involve side effects. I think they tend to be overused, and we put too much faith in them to the point that we ignore the negative aspects. And the research for pharmaceuticals tends to be profit-driven.

Now don’t get me wrong: I’ve never been flat-out against pharmaceuticals — I believe they have their place. I know they save lives and I’m grateful for that. I’ve always believed in the value of science, hospitals, medicine, etc. I wouldn’t reject a treatment out of hand just because it was developed by scientists in a lab. But I confess they make me uncomfortable, and they raise all kinds of complex ethical and moral questions in my mind. And I tend to believe that where possible, a natural solution should be sought before an unnatural one.

And then along comes Felix.

He was born with a genetic mutation that prevents his body from building up an immune system. There’s no “natural” cure for a genetic mutation. Nature dictates that he should die. According to the laws of nature, he shouldn’t be able to pass down his genetic information to future generations.

But we’re keeping him alive. Felix is being kept alive by science alone.

His body is being nourished by a chemical cocktail developed in a lab, that’s being delivered directly into his stomach. He doesn’t even have to swallow it. Infection is being warded off my antibiotics and antiviral medications, which are pumped into his body intravenously daily. He spent several weeks on oxygen. Most significantly, the missing element of his immune system — an enzyme called ADA — is being manufactured in cows and injected into his body twice weekly.

There is nothing natural about this.

The best long-term solution for Felix’s survival is an experimental treatment called gene therapy. His bone marrow will be harvested, the cells corrected, and then re-transplanted into his body.

He will essentially be a genetically modified organism.

(It probably comes as no surprise I do my best to avoid GMO’s at all costs because I believe they are harmful to the environment and human health.)

Everything I’ve ever known about healthy living doesn’t apply to Felix.

I wasn’t able to breastfeed him, which I understand to the healthiest decision you can make for your child. In fact, he probably got CMV (a virus) from my breast milk which has put his life at risk. Everything I know about maintaining gut health and supporting the immune system is irrelevant to him. He’s been on constant antibiotics and is not allowed to get probiotics, because they could pose a threat to him.

He can’t even spend time in nature, which I believe has immense healing power. The fungi and bacteria in the air could make him sick.

I have no idea how to best raise this child and have had to defer to the doctors for all of it.

It’s honestly a bit of an ethical conundrum for me.

Felix’s treatments will cost hundreds of thousands of dollars over the next few years. Is it really morally acceptable to pour so much into a single baby when that money could save hundreds of other lives? (I understand that malaria is a huge killer but relatively inexpensive to cure, if the resources get into the right hands.)

It even feels weird keeping him alive unnaturally. Obviously, I want my beloved son to live and be healthy  more than anything else in the world. If he has a chance at a long and happy life I want to take it. It would be wrong not to take it, right? I don’t want him to suffer and die as a baby.

But at the same time, we must all suffer and die eventually . . . is it so much worse as a baby?

These are the things that trouble me day in and day out. My brain and my heart are in constant tension, though it’s getting better with time (as long as I don’t think about it much.)

This experience is forcing me to be open-minded about science and research and pharmaceutical medicine. I am being forced to rethink many long-held beliefs and explore many deep-seated feelings.

I kind of hate it.

Has anyone else had similar experiences?