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.
Thank you so much for sharing this. As the parent of a profoundly disabled son myself, I found this fascinating and so relatable. I totally understand this decision and now plan to talk about it with our doctor, even though our son is already 8 and may be too grown for it to be beneficial. But as my husband is 6-4 220, I am living in fear of how big my son may one day get. Thank you for sharing your thoughts and process.
It’s definitely worth talking to your doctor about! Yes, had we started this a few years ago the resulting height would be a lot less, but Grayson is almost 9 and I still think it’s going to be worth it. I’d be happy to get you the contact info of the dr we are seeing- email me at elizabeth@elizabethkbaker if interested.
Our son is 13 and is currently 54” and 70 pounds and we just started the therapy in October 2020. We also went to Childrens Hospital in Colorado. They are wonderful!
I promise to pray for the people in these two stories and to do a much better job at handling situations in my life that seem so major in the moment, but in retrospect are so minor compared to the daily lives of these people. Thank you for sharing the strength behind your coping skills and for helping me to grow in a better direction in life!
Thank you for sharing- I am sure you have done what you felt was best for your son’s comfort and happiness in love and wish you and your family every blessing.
God bless you and your family. I know He will. You are such a loving and caring Mom. You touched my heart.
I have worked with severly medically involved children in the past…..I feel you are doing the right thing.
You and your son will be in my prayers.
I am a pediatric sonographer and have worked in a pediatric hospital for 32 years. I applaud your decision-making! I have watched as elderly grandparents, moms on their own, and caregivers of all shapes and sizes struggle with moving a full grown man over to the table. I have a lift so I can save them the wear and tear on their backs, but I know they are doing this at home all day every day. If there is something that can be done to make yours and his life just a tiny bit better, I am all for going for it and can find no fault at all!
Thank you for sharing. I know it will be a great comfort and a brilliant suggestion for many parents and caregivers.
Praying blessings for your family. As a retired nurse, I know several families who could have benefited from this therapy, had it only been available to them in time. Congratulations on having the courage to face the future head-on, & take every availavle avenue to ensure a comfortable life for your precious child.
If not for the current political climate, I would not have found you and your work, which would have been a shame because I appreciate you both so much. I believe light comes in proportion to dark, and if we have to live through this current time in country, I’m grateful to at least have found you and other beacons of light in the storm. Thank you for your courage to do and say the big and small things. Your boy is blessed to have landed you as his mama.
You are doing what is needed for your son to have the best quality of life. He can remain in your care, you can give him the love he needs and love your other children too. Everything you can do to make his life more comfortable, which includes your care this is your loving choice.
It is wonderful to read an article written by a parent who wants to provide care for her child throughout his life, instead of sending the child to a group home or other facility. My God bless you and guide you in the difficult care decisions you are facing.
This it’s very timely. Our son is only 2.5, but it’s already a discussion we are having for the future. I am 5’3, my husband is 6’3”, and also 14 years older than I am. I fear the day when I will be caring for my son alone, and the potential of him being so much larger than me. As difficult of a discussion and decision this is, I am so thankful the option even exists to consider. Thank you for sharing your perspective and experience so far.
Let me respond as a parent of a son with completely different diagnosis but with similar capabilities. We were not aware of this kind of therapy. We continually worried about our son getting too big for us to handle, especially as we age. Our son will soon be 25, and we more or less dodged the issue because he grew to just 60ish pounds. Nonetheless, we are now in our 60s and 60 pounds of dead weight is all we can handle. We have chosen to keep our son at home as long as possible, and his size is an important factor. I applaud and wholeheartedly support your decision. Your foresight will be best for your son and you. Good luck.
I am enjoying your blog. I, too, have similar struggles with evangelicalism
I once cared for a child with the same conditions as Grayson. I read about these treatments in my bioethics class. What you’re doing isn’t an easy decision to make. I’m sure it’s not an easy decision for MD’s to make either. I honestly wouldn’t know what to do, but I’m glad you are at peace with your decision. There are also Hoyer Lifts and other equipment.
WE recently adopted a 5 year old with profound special needs from Eastern Europe. She’s 5 yet only 21 lbs but just had a G tube placed and I’m sure will gain weight fairly quickly. My husband is a firefighter and has a herniated disc and I’m looking into this therapy. I know people have ethical concerns but I’m still not completely sure why… the way I see it, this would drastically increase the quality of her life as she gets older and bigger and can continue to be included in so many activities and continue to live at home. Thank you for writing about this!
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