For families like ours, being judged, shamed and criticized about the decisions we make for our children is an unfortunate part of our daily life. And you know what? I can’t say I blame people for that, because most people dwell comfortably in a world of absolutes. This is right and that is wrong. This is natural and that is not. This is black and that is white. It is easy to judge from a place of absolutes. If only those people who judge though, could walk a mile in the shoes of a parent caring for a child with severe disabilities, they could begin to understand the 50 shades of grey that is our everyday reality.
In this version of life and parenting, there are no blacks or whites, wrongs or rights. There is only an eternal game of trying to pick the lesser of all the evils. We try to choose the therapeutic option with the least side effects, constantly weigh the pros and the cons, try to guess how our child will respond, and sometimes, we are forced to take a leap of faith into the unknown of a new or controversial option.
Growth Attenuation (GA) is one of these controversial and fiercely judged medical interventions that has been so wrought with criticism, it has become almost entirely inaccessible for the families who seek it.
GA is a hormonal therapy that limits the linear growth of a child’s body through the use of high-dose estrogen delivered via patches or pills. The estrogen accelerates the closure of the epiphyseal growth plates, essentially maturing the child’s skeleton more rapidly than it naturally would. For both males and females, estrogen is the hormone that closes growth plates, so it is used for GA in both sexes. You may be thinking, “But boys make testosterone, not estrogen…” This is true. In the process of natural puberty, boys do produce testosterone but then a portion of that testosterone is actually converted to estrogen in order to close the growth plates, hence the reason they use it for GA as well.
If effective, GA can reduce their final adult height and weight significantly, giving way to a host of benefits. By limiting linear growth, this therapy can decrease the pain from spastic muscles being stretched ever tighter by lengthening bones, and in some cases has slowed or completely stopped progressive scoliosis. By allowing a child to reach maturity with a smaller frame, GA makes their life-long care less physically taxing, enabling families to continue their child’s care at home as opposed to in a care facility. A smaller body size also enables caregivers to keep the child maximally mobile as they grow, and as we all know, mobility is a key component to the overall health and wellness of any human body.
During GA therapy, which lasts on average 2-4 years, children are monitored by hand x-rays and regular labs to assess estrogen levels and any changes in health. The possible side effects include the growth of breast buds (in males as well as females) that may or may not go away once the therapy is concluded, blood clots (although the patch delivery method has greatly decreased this risk, as does the high spasticity common in conditions like spastic cerebral palsy), increased or changing seizure activity in children with epilepsy and mood changes similar to puberty. Some children tolerate the therapy extremely well but for those who don’t, there is always the option to discontinue treatment at any point. If well tolerated, the estrogen is continued until the growth plates are fully closed or until the body begins puberty. If the child’s body goes into puberty then it begins to make its own sex hormones, meaning that the supplemental estrogen is no longer necessary.
In years past, this treatment was available at multiple hospitals, but since a public outcry in 2007, surrounding a child treated at Seattle Children’s Hospital, most ethics boards have completely shut down the programs.
The case that caused this outcry, however, actually involved far more than just GA. It was a situation where a combination of medical interventions were performed including surgical removal of the child’s breast buds, appendix and uterus, in addition to attenuating her growth. This combination of treatments was named “The Ashley Treatment” after the little girl who first received them. To most, these surgical interventions likely seem extreme and perhaps even unethical, but it’s important to understand her family’s thoughts and motivations before making those judgements. I found this interview, given by her father 5 years after the procedures, to be very eye-opening as to why they made the choices they did.
The Ashley Treatment created a massive stir in the world of disability rights and advocacy, and on the positive side, that wide-spread publicity helped to educate parents about the existence and potential benefits of Growth Attenuation. Sadly, though, Ashley’s family had to endure horrendous criticism, and that strong public backlash was enough for the ethics boards of most hospitals to shut down this treatment option for other children completely, even though The Ashley Treatment was considerably more invasive than GA therapy alone.
Frustratingly, even all these years later, it is nearly impossible to find a doctor who will entertain the idea of GA. It, apparently, has become a taboo topic, inseparable from the controversy that drove it to fame.
Due to its’ controversial nature, it can be very difficult to gain support from a child’s medical team, despite its potential for maintaining their quality of life. I, personally, tried without success for two years to find a doctor willing to consider this treatment option for Oliver. Thankfully, this year we struck gold with a doctor who shall remain unnamed and have been hard at work establishing ourselves at a hospital halfway across the country.
Although people are quick to judge, this medical decision, like most decisions in the world of severe disability, wasn’t an easy one for our family. We lost plenty of sleep, agonizing over whether or not this was the right choice for our son. But what made things even harder was the absolute lack of personal testimony, experience or data out there regarding this subject. It was mind-boggling to me that in the age of Google, where any and all knowledge known to man is easily accessed by the click of a button, the search results for growth attenuation were disappointingly lacking in abundance. My guess is that this is because the families and doctors who have chosen this treatment, have done so in relative secrecy, not keen to draw public attention to their unpopular choice. Unfortunately, this also means that because these treatments have been done under wraps, centralized data collection, monitoring, and the tabulation of outcomes, are basically non-existent. This makes it difficult for families considering GA to have an accurate picture of what to truly expect from the therapy. (ie. At what point will my child likely stop growing? How heavy will they get? What are the chances that the therapy won’t work? How many children experience serious side effects?)
The only thing worse than making heart-wrenching medical choices for your child, is trying to make those choices in the absence of support and knowledge. It is for this reason and because of the fact that I truly believe in the life-enhancing potential of this treatment, that I have decided to share our GA journey with the world. I have no idea how this whole thing will unfold for Oliver, but I do hope that sharing it will make it easier for families like ours to decide whether or not to take this road less traveled too.