Parents have differing ambitions for their children, one supposes. Everyone wants their kids to be happy, to live fulfilling lives and to avoid the mistakes that they themselves have made.
However, one also harbors the suspicion that those with more temporal aspirations for their offspring – riches, marrying “up,” political ambitions – are more likely to keep such objectives to themselves, their spouses or a tight-knit group of friends who think along the same lines.
My hopes for my six children have always been the same: good health, happiness and holiness (I like alliteration). That’s been my prayer for each of them every night. If they can achieve a modicum of those three, their lives will be rich beyond measure.
For daughter No. 3, who I will refer to as Caroline, since that’s her name, my prayers have already been answered many times over. Not only is she a happy young lady and goes to church on her own, but she has overcome a host of early health issues that left her life in jeopardy from the moment she was born.
Caroline was diagnosed with a congenital cystic adenomatoid malformation before she was born. Because she was a twin, there was no chance of doctors performing surgery while she was still in the womb. The congenital cystic adenomatoid malformation, or CCAM, prevented one of the lobes in her right lung from developing, leaving it instead a mass incapable of functioning like normal lung tissue.
Daughter No. 3 in action earlier this year. And, yes, she will exact revenge upon me for using this photo.
Fortunately, she was delivered at one of the best hospitals in the Southeast, the Palmetto Health Children’s Hospital. Within moments of her birth, she was whisked to the neonatal intensive care unit. Almost immediately, because the CCAM was preventing her from getting necessary oxygen, she was placed on a frightening piece of equipment that provided extracorporeal membrane oxygenation, called an ECMO machine.
ECMO is a heart-lung bypass that oxygenates the blood. It is described as “advanced life support technique used for patients with life-threatening problems.” It is used “only when all of the standard treatments for those problems have already been tried.”
The goal is to support the patient while doctors try to treat the underlying issue. Unfortunately, the longer a newborn is on ECMO, the greater the chances of bleeding in the brain, which can cause brain damage or even death.
My then-wife, having given birth to twins by caesarian, was recuperating and understandably unable to visit Caroline in the hours after her birth. I was able to see my daughter within an hour after she’d been born, and she was already hooked up to the very large machine, with oxygenated blood being circulated into her body through a cannulae in her neck. Standing there alone, with just a nurse monitoring her, as machines beeped and blinked over my tiny baby was very sobering experience.
Even more difficult was what occurred a short time later, when a nurse asked if I had a priest I wanted to call. She knew we were Catholic and that if things didn’t look good for Caroline that we would want her baptized immediately. I said yes, and made the call.
The priest showed up a short time later and not only baptized my hours-old daughter, but also gave her extreme unction, better known as last rites. Caroline had been born at 1:01 p.m. and I distinctly remember more than once praying that she make it until at least midnight, so that no would think she had been a stillborn. It’s odd what one dwells on in times of crisis.
My mother had flown out from California and my ex-wife’s parents were on hand, as well. As excited as everyone was about the second baby, who I’ll call Abby, since that’s her name, there was a definite sense of foreboding as we watched little Caroline struggling while hooked up to the ECMO.
We would visit her regularly, and I was there one day by myself when she opened her eyes for what I believe was the first time. She was looking directly at me. I have no idea if she could focus on me or even knew of my presence, but it was a positive development. It was on that day that she was able to grip my finger with her tiny hand for the first time.
However, attempts to take her off ECMO weren’t progressing. Because of the danger of brain bleeds, the maximum time a newborn is allowed on the machine is three weeks. As we passed the two-week mark, Caroline’s compromised lungs still were unable to take the strain of her breathing on her own. Doctors had removed the mass, but each time they tried to take her off the machine, she wasn’t able to get enough oxygen into her bloodstream on her own and would have to go back on ECMO.
Walking outside the hospital one late spring day, I distinctly remember asking my mom if we would have to look into organ donation. She said we should wait and see what happened.
As the third and final week of Caroline on the machine came to a close, things were not looking particularly good. But just as we were preparing for the worst, Caroline’s lungs improved enough that doctors were able to remove her from the heart-lung bypass and she was able to breathe on her own. It seemed like a last-minute reprieve.
There were more challenges ahead. Did she have brain damage from her extended stay on the ECMO? (no, fortunately); she had had so many surgeries that she had become addicted to morphine, which she had to be weaned from; she would spend more than three months in the neonatal intensive care unit before she could come home and join her twin and older sister and brother, and she needed physical therapy because her neck muscles hadn’t developed, leaving her unable to hold her head up, because she had had to lay in the same position on the heart-lung transplant machine for three weeks.
Why do I write this today? Last night Caroline attended her high school cross country team’s annual banquet. The girl born without the middle lobe on her right lung spent the last five years running cross country, and another four years running track.
She wasn’t the fastest, but she worked hard, didn’t complain and developed a love for a sport she will likely enjoy her entire life. Ironically, it was eight years yesterday that she went for her first run, with her stepmother – my wife – who took her and her sisters out for a jog to introduce them to the sport.
Over the past few years of attending my daughter’s cross country races I’ve seen parents yell at their children for not finishing as well as the parent would have liked. I’ve seen parents say how disappointed they were with their kid’s performance, turn their backs on them, walk away from them and even make them cry.
Me? I was grateful for every time Caroline got out there and ran. She made some wonderful friends, was part of a good team and learned lessons that will serve her well through life. Many a time as she ran past me I thought back to that spring when all I wanted was for her to live to the next day, or to open her eyes just once so she could see me.
Needless to say, many times over the past five years I’ve thanked God for giving me the chance to see my daughter run, and last night, when she walked up and received her school letter from her coach, culminating years of hard work, I said another prayer of thanks that she has come so far.
She is a good person with a good heart, as are all of her siblings.
It is said that we often don’t know what we have until we’ve lost it. Having nearly lost a daughter at birth, I’ve long recognized and appreciated what I have with my children.
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