I thought it might be interesting to share with you, a few final thoughts on some of the concerns or issues that Ashley’s parents raised on their blog. The purpose of this exercise is to help people who do not care for severely disabled children, to better understand what other options or solutions are available to severely disabled children, and to add some questions and/or comments as food for thought. Certainly every solution has it’s benefits, as the a parents pointed out, like removing her breasts so she wouldn’t get breast cancer, however because it is a solution with a benefit, doesn’t mean it was the best solution for a six year old or for a six year old severely disabled child.
These comments are strictly my opinion and I thought it would be helpful for people to understand that many of their concerns are not unique, nor is Ashley the first severely disabled child to have these issues. What I found difficult to understand was the solutions, the rationale for the solutions, and the failure of pediatric physicians, her teachers and her therapists to offer these common solutions that are offered to severely disabled children. I will speak from my own direct experience with Dear Son who’s encountered these exact same issues. I should also point out, that Dear Son has no use of his arms or hands that make it more difficult. Ashley however, does not have that issue, that I am aware.
As a reminder, I am a single mother and take care of Dear Son on my own without any private duty nursing. His is 150 pounds, approximately 5’9” tall, can not walk, sit up, roll over, stand, weight bear and has no use of his arms or hands. He wear diapers and is not toilet trained. He has intractable seizures due to a rare gene mutation (His diagnosis is Cryptogenic Infantile Spasms caused by the ARX mutation-it’s so new they don’t even have a name for it yet. The gene was only discovered in 2002 and he was one of the first cases to be identified and they created a mouse using Dear Son’s DNA.) He has a Vagus Nerve Stimulator, is on six seizure meds and two GI meds that are given four times a day and has a feeding tube. I give him meds at 6 a.m., noon, 6 p.m and midnight. I get up at 4:10 a.m. to start his feedings to they will be done at school. I am also up many times in between. I work part time in addition to taking care of him full time. I do not have any household help. I have lived this life. Here are my thoughts.
Issue: It’s physically difficult to move her.
Solution: Stunt growth to make it easier.
My thoughts: Moving children with severe disabilities can be hard and can be tough. It’s not easy. When my own Dear Son was younger, I wondered how I would move him. I didn’t know about the many options that were available however I had many people that helped me with these solutions: our therapists at school, our durable medical equipment vendor, our pediatric neurologist and our physiatrist (a physician who specializes in physical medicine and rehabilitation). In 2004, when Dear Son became very immobile, I spent two weeks in a rehabilitation hospital with him to learn how to dress him, lift him easier, use different equipment, as well as try to improve his functioning.
We have equipment to make it easier to move children. One of the most common pieces of equipment that is used is a Hoyer Lift. It doesn’t matter what particular weight the child is because you typically will get one of these when you begin to reach your limit to lift these children. A Hoyer Lift is a common piece of equipment for the severely disabled. It’s not difficult to use. I got ours recently however Dear Son’s bed wasn’t high enough for the lift to fit under. After trying different castors and bed frames, I ordered a hospital bed. The hospital bed will have enough room to get the lift under it and will raise and lower making it easier to dress him, change his diaper and give him a different position instead of lying down all the time. I also have a wooden sliding board that I set on the rear seat in the back of my car; I set Dear Son on it and then slide him over into the proper position on the seat. You then pull the board out from under him and fasten his seatbelt. My biggest challenge is the $2000 a year limit on durable medical equipment which means it only partially covers one of the pieces of equipment a year.
Most children who are severely disabled still go to school and will be in a special needs classroom. Every year, an Individualized Education Plan is created, also known as an IEP, that lists the goals for the year. Included in these discussions are the teachers, parents, all of the therapists that treat that severely disabled child, along with the people from the special education co-operative. A common goal for these kinds of kids is transfers, like transferring them from a bed to a wheelchair. This was one of Dear Son’s goals in grade school. The physical therapist will typically make recommendations for equipment for your child and then your child’s pediatrician will write the actual prescription and a letter of medical necessity for the child. If it’s decided that they need this equipment at school, they will write tn in the IEP and the school will get it for use at school.
In this case, the parents report that they move Ashley from room to room with a double stroller and that she likes to lie down.
Food for thought: How did the stunting her growth make the move easier? Why didn’t a physical therapist recommend a Hoyer Lift and/or why didn’t her physicians make an “appropriate” referral for therapy services for equipment evaluation. Typcially, when your child can’t sit up any longer, one solution is a tilt wheelchair, that Dear Son just received. It allows you to tilt the child back, makes transfers easier for the child who can’t support themselves, and opens up the chest area.
Finally, how did the surgery make it easier to move her, when they still transport her in a double stroller? Also, if Ashley were taller and heavier, all of the above solutions would work.
Issue: If she’s too big, she’ll have to go into an institution.
Solution: Stunt the growth so she can be cared for at home.
My thoughts: Becca summed it up best when she said that, “No one ever gets too big to go to a home, ever. That’s what hoists, and bath lifts, and slider boards and adjustable height beds and changing tables are for.”
I addressed all of these except the bath lift which I will address here.
Issue: If she’s too tall, she can’t go into a bathtub.
Solution: Stunt growth so she won’t grow so tall and can be bathed in a tub.
My thoughts: Bathing is a common challenge. While there are shower type chairs, I know my own Dear Son never liked a shower. He prefers baths. Their concerns, from what I read, was that she wouldn’t be able to take a bath because she needed some head support and needs to lie down in the tub.
Dear Son is probably 5’9” or above. It’s hard to measure when they can’t stand up. He wears a 34 inch inseam pant so he could be closer to 6 feet tall. He is taller than Ashley would be at full adult growth. He fits into the tub. At the present time, I have a bath chair that fits in the tub that supports his head and arms. One problem I had was that I can’t lift him into the tub and it was getting hard for his Dad to do this. We recently ordered a hydrolic bath lift with headrest and reclining wing support because Dear Son can not hold his head up due to hypotonia and I can’t lift him due to his weight and size (it’s hard to dead lift a slippery child from a tub with the weight of the child and the water pulling him down). I had an in-home evaluation with our durable medical equipment vendor. He simply made certain that I had one inch on either side of the tub for the supports to rest. That’s all that was needed. I live in an apartment so I didn’t make any other modifications. The new lift will support his head, will allow him to lie back and will have the sides supported by the tub. Case solved. He can take a bath and he’s tall. There are also permanent options available to people who live in their homes. I love interior design and have not found many of these solutions to be too bad. You can solve any asthetic issues most of the time. If you like, they also have six foot tubs if people want them however Dear Son fits in a regular tub and he exceeds Ashley’s projected adult height and weight by more than a few inches and more than a few pounds.
Final thoughts: A bath lift would be less intrusive than stunting a child’s growth.
Issue: If she’s too big, she could get bedsores.
Solution: Stunt her growth and it will be less likely.
My thoughts: I am no expert on bed sores however it’s my understanding that frequent movement is the key. The surgery didn’t guarantee these wouldn’t happen and she can still get bedsores. It would be interesting to see if there is Evidence Based Medicine (EBM) regarding whether or not smaller individuals get few bed sores. Most responsible physicians practice EBM.
The parents say they move her often.
My own Dear Son can not roll over and he’s been bedridden since 2004 when he weighed approximately 90 pounds and he’s now 150 pounds. He’s never had a bed sore. Not one. He can not roll over on his own. I typically get up and move him every two hours or if I hear him fuss, I’ll get up and turn him over. Turning him over would be a less invasive solution to this problem. I would also expect that unless bed sores became a “real” problem that they wouldn’t look for a solution. As the mother of a severely disabled child, I have enough things that take up my time, than looking for a problem or trying to solve a problem that doesn’t yet exist.
Issue: If she’s too big, she could get pneumonia.
Solution: Stunt her growth so she won’t get too big.
My thoughts: She can still get pneumonia and the surgery didn’t guarantee these won’t happen. I read that they continue to move her around the house in a double baby stroller lying down and they also state she prefers to lie down instead of sit upright in her wheelchair.
I am not a physician, but with my own experience with Dear Son, who’s had two MRSA pneumonias in 2006, I have been told to keep him upright. One of the reasons for the tilt wheelchair, is that it opens up his chest area, making it easier for him to breathe. Tilting him back not only opens this area up, as opposed to him slumping in the chair, but being upright will make it less likely for pneumonias to occur. For the physicians involved in this case, I would be curious to know if there is any Evidence Based Medicine that supports the claim that size is correlated to pneumonias and also is size a better correlater than being upright.
In addition, as I mentioned earlier, a hospital bed that raises and lowers, would allow for better positioning and keeping her upright would lessen the chances for a pneumonia. Was this not offered as an option? Why not?
I am also curious to learn how the school transports her. I doubt a double stroller is used. Were they involved in this discussion? Was the school psychologist involved in this discussion? I know in Dear Son’s case, they use his tilt wheelchair at school, they use a Hoyer Lift and they use a bench for him to lie on with lots of different wedges for proper support.
Finally, a lot of the issues that the parents raised for the surgery, seem to be equipment based. Prior to this committee discussion, was an in-home evaluation performed to see what equipment could assist with her care. If not, why not?
And lastly, did the surgery lessen the chances for pneumonia?
Issue: It’s hard to hold and love her.
Solution: Stunting her growth and keeping her smaller will make it easier for her parents to cuddle her and hold her.
My thoughts: I can’t begin to lift Dear Son up and cuddle him like a baby. I haven’t been able to do it for years. I don’t know many mothers or grandmothers who wouldn’t love to hold their babies and kiss their head. But kids grow. When they are around ten or so, most mothers will be sad their “babies” are growing up and they can’t do that. They will mourn the loss of that. But each age brings something new and exciting. That’s part of the joy of being a mother, watching your kids grow up. The same occurs for disabled children.
I get up every morning and go over to Dear Son’s room and take his arms, which don’t work, and wrap one of them around my neck. I then wrap my arms around him and give him a hug and kisses. That’s what we do. (That’s also how I learned he needed to go to the hospital for the MRSA pneumonia. I went to hug him and he was so hot it took my breath away. You can read about that in the MRSA Pneumonia, Part One.) He still is loved but I don’t need to hold him like a baby to do it. When I get ready to lift him into the wheelchair, I lift his back up and off the bed, and then stop a minute to hug him before putting him into the chair. If I bring him into the living room, I prop him on the sofa and support him by holding him up next to me. I kiss him on the head. His Dad does the same thing when he has him. He is loved.
Issue: She is 100% dependent on Care Givers.
Solution: Stunt her growth to make it easier to care for her.
My thoughts: According to their blog, I understand that the parents and the Grandmother care for her. As a result of the surgery, did it allow any more people to care for her?
Issue: She has a 5% chance of developing appendicitis in the general population and she can’t tell you she’s in pain.
Solution: Remove appendix so she’ll never get appendicitis.
My thoughts: She could still get other things. Are we going to remove every possibility of anything that might happen? They say that she enjoys music and I’ve seen pictures of her smiling. I know with my own Dear Son, he does the same thing. I believe if a child can show pleasure, they can show pain.
In every pediatric emergency room I have ever been in, and I’ve been in almost twenty hospitals to date, there is a sign on the wall with faces for the child to rate the amount of pain they are having. Typically, a child will point to the level of pain. Even if they can’t, they will still make a face or they will be different from “their” normal routine. Worse case scenario, Ashley’s parents can match up her face to the chart on the wall.
Although I am not a physician or a nurse, the biggest indicator to me of an infection of any kind is a fever.
I know my own Dear Son can’t talk. I usually know something’s wrong when he 1) has a fever, 2) sleeps more than normal 3) doesn’t enjoy his usual country music and 4) has a sick look in his eyes. It’s more common sense than rocket science. Once you care for these kids, you know when something’s not right.
Issue: Periods are hard to manage. How would she deal with menstrual cramps? How could she defend herself if she were attacked? She won’t ever bear children.
My thoughts: Someone once said on one of the blogs, “What’s one more thing in the diaper?” Another thought is that it’s an assumption that all women have discomfort with their menstrual cycle. I am not certain that this is a fact. I can’t remember a time in the last twenty years when I ever had cramps. That may be TMI or just me but my point is it’s not universal. If she was making a face (see the pains faces in the ER above) and you knew she was in pain, you could quickly assess if anything was serious or not. You could check for a fever. If not fever then you could go down the line to see if there was an issue. I haven’t found it particularly difficult to figure out when Dear Son was in pain. He still cried, made a noise or got a fever if something was up. They say Ashley flaps her arms and responds to music. If she can do this, then she can clearly show when something isn’t right. You could also give her some pain reliever in through the g-tube if it wasn’t anything serious, even if you didn’t know what was wrong.
I have a respite worker that is also an aide to the severely handicapped at school. She cares for severely disabled children who are ages nine to eleven at school. She cares for young disabled girls with breasts and periods. She was also Dear Son’s aide at school when he was that age. We’ve had many discussions over the years about many of the issues facing these girls. The biggest challenge was getting the physically abled girls to go to the bathroom, so she could help them get changed, when they were leaking or to make sure they won’t leak. She would have to help them, and change their clothes. I am not aware of any issues that she had with the severely disabled girls in terms of pain or cramps. I am not saying they don’t exist, only that the challenges were getting them to the bathroom, not pain issues.
A hysterectomy does not prevent anyone from attacking Ashley; it only prevents a pregnancy. How was this procedure justified? Is this a “use it or lose it”. If someone will never have children, do we need to start performing hysterectomies? And what age is too young? How about three years old? And can we accurately predict at birth, what a child’s full potential is? And how will we measure that?
Finally, a question for the physicians. Is it reasonable to give a hysterectomy to a child at six years old on the basis that she “may” encounter these problems? I am having difficulty understanding a lot of the rationale surrounding this case. Most good physicians are pretty strict about using both evidence based medicine to make decisions and about making appropriate referrals when care is needed and the problem lies outside their level of expertise.
Issues: Boredom, Want to improve quality of life.
Solution: Stunt Growth to make it easier to move her, so she can participate in more activities at home-swinging, bathing, going into the living room.
My thoughts: I have covered the equipment issues that make it easier to move her from room to room and I have also covered the fact that the school moves her with different types of equipment. I have discussed the bath chair. I have discussed the fact that the parents did not indicate in the blog that an outcome of the surgery allowed any more people to care for her.
What I think is a better solution to quality of life issues and boredom would be licensed daycare centers that accept severely disabled children. Daycare would not only give her parents a break but allow her more experiences and more stimulation to relieve boredom. This seems like a better solution. Public bathrooms that are family centered with a changing bench would allow the parents to take her on more outings with the family and that allow her more experiences.
As a society we have difficulties in finding a financial model for daycare centers. I have one idea for this but I will cover it in another post. Respite care would help give the parents a break and also provide for someone different to care for her and break up some boredom. There are also places like “Lekotek” that are toy lending libraries that have lots of toys to borrow so you don’t get bored. I used many of these toys when Dear Son was younger and he got a kick out of them.
Finally, is stunting her growth the path of least resistance? As a physician, is this really a valid reason for allowing the surgeries and hormones?
Summary: I have mentioned before that I was troubled by this treatment for many reasons. I hope I have allowed you to view this case from a different viewpoint, from the viewpoint of a single mother who is dealing with all of these issues. I can understand how overwhelming it can be when you are parenting a child with severe disabilities. As a parent, you don’t have all the answers and often you worry about a lot of things that “might” happen. I also know that many of the things I was really worried about, never happened.
What I found difficult to believe in this case, wasn’t the parents asking for these radical solutions, but the fact that I didn’t hear any part where physicians, or other people involved in Ashley’s care, making appropriate referrals for equipment. I didn’t hear anything about whether or not these solutions were based on “Evidence Based Medicine”. I was troubled by the fact that they stated that this committee was composed of 40 individuals, with an equal number of men and women. What were the odds of that? Other things that troubled me were the removal of the breasts. I couldn’t understand the logic of making it easier to move her or for wheelchair straps to be put on. Ashley may or “may not” grow large breasts. Even if she did, there are a variety of straps that support these children. I know because we tried a few different types for Dear Son. On top of that, were odd statements, like “she’ll never get breast cancer”. At six years old, that would be the last thing I would be worried about. How could a responsible physician think that some of these solutions would be appropriate at “six years old”? And finally, it is said that the parents waited outside the room for the decision and the decision was that they could do what they thought was best for her. That’s different than the committee saying they agreed with them.
I also found some surveys that asked, "Who should have the final say on who gets to decide, the Ethicists or the Care Givers?" Some people cried out, what about the disabled? My question is when have “you” ever gone to a physician and presented him with a problem and they told you that you could do what “you” thought was best? Huh? I expect that when I talk to my son’s Pediatric Neurologist, his Primary Care Physician, we can speak openly about a problem. He’ll ask me questions and I’ll typically ask him about solutions that I have heard, or about things I may have read on the internet. If it’s not his area of expertise, he makes an appropriate referral, usually to a pediatric physician at the Big Academic Medical Center. When we have our visit, he’ll run a series of tests, to see if the solution is warranted. Then he’ll offer me some options, starting with the least invasive. If something is not a solution, he’ll tell me it’s not viable. He is in charge of the care. Not me the Care Giver, not me the Mother, not my Dear Son and not the Ethicists. When he presents the solution to me, he explains it to me. I trust that he knows what he is doing since he’s given a high level of care and since he’s saved Dear Son’s life on a number of occasions. If I was uncomfortable, I would address that with him. If I didn’t understand something, I might ask more questions or get a second opinion. I trust him because he practices Evidence Based Medicine. I trust him because he looks out for Dear Son’s best interests as well as mine. I trust him because I know he is ethical. I also have a long standing relationship with him. He is an expert on children. He is a medical doctor. He has the same standards for all his patients. I don’t expect that he has a different set of rules for the disabled than he does for able bodied patients. He respects all children. He also understands a lot of issues related to the care of severely disabled children. What I don’t think he would ever do though, is allow me to make my own decisions for Dear Son, without Evidence Based Medicine to back it up.
I also believe in human dignity. There were many years when Dear Son didn’t have a clue what was going on. There still are times every year, when he’s totally gone, frequently after a long hospitalization. He might sleep for months and isn’t allowed to go to school, as was the case in the fall of 2005. He was so out of it and weak in early November of 2006, when I wrote, “Killing Me Softly With His Song” that I thought he’d never recover. I’ve been very lucky. He somehow hangs on. He’s been doing better since I had his birthday parties in November and Christmas parties in December. But even when he didn’t know what was going on, I still gave him a bath, I still changed his diapers, I still fed him nutritious food and I still loved him. He wasn’t any less a person because he couldn’t do things or because he didn’t know what was going on. Never. I always tried to make him feel good about who he was, regardless of what his body could or couldn’t do. I learned to admire him for being a healthy, well adjusted young man, despite his disabilities. I wish I were as confident as he is some days and I have a lot of abilities.
I realize that caring for severely disabled children is difficult, but this case is not about these issues. The real issues are that we do a lousy job as a society in caring for these children. But no one wants to talk about that. And that will never lead to the change we need. I’ll still have to take home Dear Son to change his diaper when we are out. And that is just the tip of the iceberg on the real issues we face.
P.S. *As a reminder, don’t forget to vote for me at the 2006 Medical Weblog Awards under “Best Patient Blog”. You can vote here. Just click on, “Dream Mom” and hit the “vote” button. Polls are open from January 3, 2007 through January 14th. Thank you.