What My Nephew’s Birth Defects Are Teaching Me About Love…and Fear
When you’re afraid, love harder
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There should be a rule that children never get sick. Children should never suffer from health problems. Children should not die.
That seems perfectly reasonable, doesn’t it?
But of course, that is not the world in which we live.
I can remember my father sitting on the edge of the tub when my sister and I were little, bathing us, and getting so angry when we’d start to goof around. “Do not roughhouse in the bathtub!” he’d yell. His friend’s son had died after slipping in the bathtub and hitting his head, he told us. We were horrified by that story and it wasn’t until I was older that I realized how much it must have scared him that he could lose one of us just because of a misstep in a bathtub.
I suppose that is every parent’s nightmare — knowing that you can never truly protect your child from the most random things that might happen.
Even as an aunt, I have experienced extreme anxiety around my nieces’ and nephews’ safety. When my sister’s oldest child, Ben, was in preschool, he started riding the bus to school, per the recommendation of his case worker (he has autism). I can only imagine what that first day was like for my sister, to watch that little guy, in his knitted frog cap and striped jacket, climb those big steps and go sit on one of the seats in that giant vehicle.
I remember the night before, I tossed and turned so much, so twisted up with anxiety, that my partner finally sat up and threatened to go sleep on the couch if I couldn’t calm down.
I realized how much it must have scared him that he could lose one of us just because of a misstep in a bathtub.
When Ben started 8th grade this year and began riding his bike to school, I had similar feelings of anxiety. I’m a bicycle commuter and have almost been hit by cars more than a dozen times. Would he be okay on the streets?
But of course, all this is nothing compared to the anxiety I have around little Alex. Ben’s youngest sibling turned eight months old yesterday and has continued to surprise his doctors with his higher-than-expected blood oxygen levels. After being born with severe heart defects, doctors expected they’d have to plan an immediate intervention, believing his blood oxygen levels would never get above 80.
But no, he’s been in the low 90s and high 80s since his birth, except for some scary dips during two recent illnesses.
Nevertheless, an intervention is imminent, no matter how much he surprises the doctors. We’ve always known that. The only question has been: “When?”
I never knew what it would be like to truly worry about a child until Alex was born. We were all experiencing so much fear around the mysterious conditions of his heart defects. How would this affect him? Was it correctable? What would this journey cost, emotionally speaking?
But really, everything boiled down to the simplest question once I saw his soft, ash-brown eyes for the first time. Would he survive this?
It is a question I fear to put into words, though it has lived in my heart for these past eight months. The question only weighs heavier on me each time I see him. I am more in love with this baby than any other niece or nephew — which is saying a damn lot because I love them all so much.
What is it about him? Is it because he is so vulnerable that my love for him feels so deep? Is it because of those beautiful, innocent ash-brown eyes? Would we have such an intense connection if he had been born with a healthy heart?
I don’t know the answers to these questions, but I do know that I have a hard time leaving him when I visit my sister’s house. Unlike the other kids, I feel his absence physically — like something of me is missing. I wish I could just wrap him up in my shirt and go about my life without ever letting him go.
And the more I love him, the more terror I feel about his condition. The more I love him, the more I have to face the questions I didn’t want to ask or even think about.
Alex has been sick twice in the past four weeks. He caught a cold, first, which wiped him out. My sister told me how miserable he was and I didn’t even care about exposing myself to the virus. I dropped by one afternoon and held him for hours while he sneezed and coughed all over me.
I got sick a week later — and it was totally worth it.
Is it because he is so vulnerable that my love for him feels so deep?
Last week, he came down with parainfluenza. This is not a serious illness, but for babies with heart defects, respiratory viruses can be dangerous. His oxygen levels dropped down to 81 at one point.
I sat with him one evening, cuddling him and rocking him. His voice was so hoarse, when he cried he sounded like an injured bird. And when he coughed, I couldn’t tell if he was only coughing or if he was actually struggling to breathe. It was scary.
I said nothing about my fear — the last thing I wanted to do was to give voice to my anxiety when I knew my sister’s anxiety must’ve already been sky-high. So we did what women do — we took care of him and the other kids as if it was a normal day and made sure everyone ate a good dinner, got into clean pajamas, brushed and flossed their teeth, and read some good bedtime stories.
If there was a medical emergency coming, we weren’t going to speculate or speak about it.
Thankfully, he made it through the night without incident and his oxygen levels were in the upper 80s by the next day.
Despite this good news, my nerves were fried on Sunday and Monday. There was more to come, I knew — a doctor’s appointment I was dreading.
Alex’s echocardiogram was scheduled for Tuesday morning at 9:00 AM. He has had this non-invasive procedure done several times since birth, but has to be sedated because the technician needs a relatively still body to get clear images and data.
Sedation means no food or liquid after 3:00 AM. Alex has endured this so many times — it breaks my heart to think of it, how hungry he must get on “echo days.” He doesn’t understand what’s happening, why he’s not getting his bottle. I can’t imagine how it affects him.
On Tuesday, my mother and I decided to accompany my sister, not just as helpers, but for emotional support. I know it’s scary for my sister to endure her baby being sedated.
I had not yet witnessed that and was extremely nervous about the whole thing.
He began screaming as soon as we started the half-hour journey to the clinic. This was dangerous, as he still has a cough and lots of mucous in his lungs. The more he cried, the more he coughed, and the more he coughed, the more mucous came up.
I was sitting with him in the backseat, trying to soothe him, but he was having none of it. He just wanted his bottle.
About ten minutes from the clinic, he began choking on mucous and after a few strangled breaths, he stopped breathing. I screamed at my sister to pull over, and thankfully, as soon as she did, he began breathing again. It still terrifies me to think of that look on his face and how helpless I felt to assist him.
My sister is the most steely queen you will ever meet. She opened the door, checked on him, went into the back and grabbed another toy and a clean pacifier and then got back in the car and drove all the faster. “We just need to get there and get this over with so I can feed him,” she kept saying.
I held the pacifier in his mouth this time, determined not to let him get so worked up. I knew it would be dangerous for him if he choked again, and thankfully, with the pressure from my hand and being so worn out from crying, he fell into a fitful sleep for the next ten minutes.
About ten minutes from the clinic, he began choking on mucous and after a few strangled breaths, he stopped breathing.
A small miracle happened at the clinic. His cough made his doctor nix the sedation. Instead, they decided to try to administer the echo while he was drinking a bottle. And it worked like a charm. That sweet boy laid there so quietly, so still, so happy to finally be able to eat.
The news was not great, though not unexpected. His oxygen levels are continuing to drop, though very slowly. One of his valves is continuing to close — it’s so tiny right now, they don’t understand how his oxygen levels are where they are.
The doctor, who was the sweetest woman I think I’ve ever met, stayed with us for a long time, answering my sister’s questions while I held Alex on my lap, kissing and cuddling him and giving him a second bottle.
The doctor seemed to believe it would be best that he had his first surgery this winter, despite the very real danger of an infant having surgery during cold and flu season.
“Four weeks from now, all traces of the parainfluenza will have left his body and we’ll have a window, assuming he doesn’t get sick again, in which to do the surgery. Though it’s a risk to do it when he could get sick during recovery. But if we wait until his oxygen levels drop even further, we might be forced to do the surgery under worse conditions. We’d like to wait until spring, but that’s not necessarily going to be possible.”
My sister, brave woman that she is, asked, “Is there any chance this valve is going to close up one night while he’s sleeping?”
We all knew what she was asking. I cannot even put it into words here. No mother should ever have to ask that kind of question.
“No,” the doctor assured. “It’s closing so slowly, you will see the symptoms right away and we’d have time to decide what to do once the symptoms appeared.”
We left with no concrete answers, which seems to be the way things go with Alex. His doctors (he literally has a team of them) are going to have a conference to discuss his latest echo and decide whether or not they should wait to do the surgery. And until then, there’s nothing to be done.
Honestly, even after that, there will be little we can do except follow instructions and wait.
I meant to come home and get some work done after the appointment, but I couldn’t leave Alex. My mom, brother Jack, and I all stayed at my sister’s house for the rest of the day. I hope it was a comfort to her to have us there.
It was a comfort to me to hold Alex. I tried to put him down a few times so he could exercise (he’s just starting to crawl) but each time, he would start crying and reach up for me. He’s not usually so clingy, but after the morning we’d had, I would’ve done anything he wanted to make him feel happy and loved. Hold him all day? No problem.
And then everyone went home. I’m the only one in my family who lives alone and it was harder than I thought it would be to return to my empty house. In this case, it’s not a “single” thing. I’m not missing having a partner right now. I’m just emotionally exhausted, scared, and missing Alex. There have been a lot of tears and I might have to break into the bag of homemade cookies in my freezer.
I know there’s no point in lamenting the unfairness of this situation. No, babies should never have to suffer through health problems. Babies should never have to submit to medical procedures and surgeries. Babies should never have to go to the doctor’s office several times a week.
And heaven knows, we should never have to worry about a child’s ability to have a future.
But that’s not the way this world works. I know that, by now. I know so many people who have lost babies and children. There are no rules protecting any of us.
As my love for Alex grows, my fear about his future is also growing. It’s not something I can even think about, except when forced — like I was today.
I know there’s no point in lamenting the unfairness of this situation.
All I can do is to pray, whisper in his ear how strong his body is and how much stronger his spirit is, surround him with positive energy, and envision him getting healthier each day.
The goal is so simple: I want to experience the anxiety I’ll get when he first starts riding the bus. I want to worry about him when he starts taking his bike to school. And when he starts driving. And when he goes off to college…
I’ll take all of those anxieties and fears over this one any day. That’s my prayer for myself and for him — that he has a long, happy life and rolls his eyes at his anxious auntie every time she fusses.
© Yael Wolfe 2019
