Why We are Choosing to Stop the Growth of Our Disabled Son
Early this morning, I took a tiny green pill, dropped it into a 10 mL syringe, drew water into the syringe, and waited for the pill to dissolve. Then I slowly pushed the cloudy green solution into my son Grayson’s feeding tube extension where it made its way to his stomach. While I do this routine three times a day with multiple pills and liquid medication, this was different. This pill isn’t preventing seizures, or controlling reflux, or helping his body conserve energy. These green pills, over the course of the next 2-4 years, will slow and eventually stop Grayson’s growth.
I first read about growth attenuation therapy in a New York Times article three years ago. While the therapy, given to the most profoundly physically and cognitively disabled children, made sense to me in a practical sense (the smaller the child, the easier it is to care for them), I also understood the objections. Is this playing God? Is this not allowing children to grow into their full potential? Are parents doing this for selfish reasons? Because of these questions, it took me many months to bring up the subject with Grayson’s doctor. Thankfully, as a physician who has spent her career with families like mine, caring for medically fragile children with profound disabilities, she was full of compassion and fully understood why I would even consider altering my child’s growth potential. She promised she would research the therapy, consult her colleagues, and let me know what she learned.
Unfortunately, we hit a dead end in Houston. Our city is home to one of the largest and most prestigious medical centers in the world, and not a single endocrinologist would consider prescribing this therapy for my son, due to ethical concerns. I was disappointed, but didn’t pursue anything further and all but put the idea out of my mind. Then, more than a year later, at a routine appointment, Grayson’s doctor brought the subject up again. She said my initial inquiry about the subject had piqued her curiosity and prompted her to look outside of Houston for possibilities. She connected with an endocrinologist at Children’s Hospital Colorado, and he happened to be one of the doctors quoted in the NYT article I had read. He was willing to take Grayson on as a patient, but we would have to travel to Aurora, Colorado to get the prescription.
After an extensive phone consultation with the endocrinologist in February and having some blood work and a growth x-ray taken, we traveled to Colorado in May of this year. For all the stress and logistics that traveling with a profoundly disabled child entails, the appointment was anticlimactic and lasted less than an hour. After a precious day spent in the mountains with our son, we left Colorado with a prescription for estradiol, a form of the hormone estrogen, that Grayson will be given at increasingly higher doses over the next several years, which will prompt the premature closing of his growth plates.
Why are we doing this?
Grayson has a rare form of Leukodystrophy and Mitochondrial Disease. He is profoundly disabled: he cannot sit up on his own, walk, talk or totally control his movements. He suffers from seizures, vision impairment, and is fed exclusively through a gastronomy tube. Caring for him is similar to caring for an infant, but in an ever-increasingly large body. At almost 9 years old, Grayson is 4 feet tall and weighs around 45 pounds, but because of his muscle spasticity, he feels much heavier. We hope and anticipate Grayson being with us for many decades to come, and at this time, transferring, dressing, changing, and holding him is manageable. But, as my husband and I age, and Grayson gets bigger and heavier, these necessary tasks will become more and more difficult. I have heard stories of parents of disabled children suffering from serious back injuries due to lifting their children, and this scares me. If I’m unable to care for him, who will?
When Grayson was a baby and was in the process of being diagnosed, my husband and I set an intention for Grayson’s life. Every decision we make for him- surgeries, therapies, education, medical treatments, and home life- are made with his comfort in mind. With everything he has stacked against him, we prioritize his comfort and happiness. And the one thing that makes Grayson happiest is being held. Every day, if only for a few minutes, I cradle him in my arms and sing to him. The most basic of human connection- touch- is something we often take for granted. My younger kids, who are 6 and 4, can jump in my arms for a hug whenever they need one, but with Grayson, we have to be very intentional to give him the physical affection every child needs. It requires lifting him out of his wheelchair or bed, supporting his head with pillows, and carefully making sure his body is comfortable and relaxed, since he can’t verbalize what he feels.
I want to have the ability to hold and sing to Grayson for as long as he is with us. Yes, keeping him small in stature will make him physically easier to care for as we all age, so in a sense, part of this decision was made for me. But I don’t think it’s selfish. Grayson needs and deserves the best care possible, whether he is 9 or 29 years old, and part of having the best care is empowering the caregivers in his life.
Growth attenuation therapy will alter Grayson’s adult height, and because of the age we are starting this, will be about 8 inches less than his predicted height. But because of his diagnosis and disabilities, he will not ever need to reach adult height. And he will still go through puberty and experience all those physical changes after the therapy is complete. As for side effects of the high doses of estradiol he will be receiving, he could experience an increased occurrence of seizures (hopefully that can be corrected with medication changes) and could possibly develop breast buds. This possible side effect does make some uncomfortable, since he is a boy, but it is completely cosmetic and will not bother Grayson emotionally at all. Throughout the course of the therapy, Grayson will have regular blood work done as well as growth x-rays twice a year. We will travel back to Colorado Children’s once a year to check in with the endocrinologist and refill the prescription for estradiol.
Parenting a child with profound disabilities often requires my husband and I to make high-stakes decisions for our son with careful consideration, but also leaps of faith. There will always be those who adamantly disagree with these decisions, especially on controversial issues like growth attenuation. On this one, we are trusting our intuition and Grayson’s doctors, and truly believe that growth attenuation therapy will give Grayson and our family a rich quality of life in the years to come.