I know many of you have been wondering about Ally’s spine surgery scheduled April 17th and what happened. We were really shocked when we arrived at the hospital 8am on 4/16/14 to pre-admit Ally for surgery and were told it was postponed/cancelled. After the initial shock/confusion, I accepted that the orthopedic surgeon needed more time to research the pro-active nutrition plan we had requested and more. I understood that he wanted to meet with the medical team that would be caring for Ally before and after surgery. I want a surgeon to be confident, caring and prepared for any possible complication that could occur while operating on my daughter and also for her care before and after. So I waited for the medical team to meet and then we scheduled a date for Billy and I to discuss the outcome with the doctor.
On Friday, April 25th, Billy and I met with the orthopedic surgeon in his office (without Ally). I’ve debated how to share what we were told in that meeting and IF I should share since it was a very emotional meeting, but I want family and friends to know what is going on with Ally’s journey and really our family’s journey with SMA. There is also going to be more discussions/research done regarding Ally, SMA, and spine surgery… so I don’t feel completely hopeless yet, but I am sad, upset, frustrated…. not even sure of the words to describe what I’m going through or Billy’s feelings since he is part of this journey too.
I am not 100% who all attended the medical team meeting, but I know it included a person from the ethics department, the orthopedic surgeon, our pediatrician (who consulted with an SMA expert in Madison), and a few medical professionals from the PICU. Several people of the team have never or barely met Ally since we switched hospitals to where the orthopedic surgeon operates at. We were not invited since it was called quickly, but I hope to get minutes on the meeting and attend if there are any future meetings. At the meeting, it was decided by the team that Ally should NOT have spine surgery and the risks outweighed the benefits. It was felt that it would not improve her breathing (since she is already trached) and would not prolong her life. I have always said that I am focusing on Ally’s quality of life and we take it one day at a time with no guarantees with SMA. Ally’s spine is already curved into an S at around 70-90 degrees in each direction while sitting, and the top of her spine/neck curves forward. When supported by a brace, the curve still measures about the same degree. My opinion is, if Ally does not have surgery in the near future, the spine curve WILL make her breathing worse, impede more on her lungs, impede on her internal organs and will cause her a ton of pain. She will lose the ability to sit up in her powerchair (that she LOVES learning to drive by herself) and she won’t even be able to tolerate a slant in her other chair. She may become sooo twisted that she will need to be bedbound, in pain, and possibly even die a slow, painful death. Without surgery, her current quality of life will definitely diminish since the curve is already so great. I DO understand greatly that there are risks, big risks of surgery, but while Ally is here on earth, my job is to advocate for her happiness, health and quality of life. From what I understand, the team felt “Ally may be near the end of her life” and this is another reason the risks don’t outweigh the benefits. I’m not sure of the exact words and whom all agreed, but I am heart broken that a medical team feels this way. This is at a hospital that I felt did a wonderful job taking care of Ally for a week when she had a blood infection in Feb 2014 and where I think she can get great care at in the future. I believe the statement that “Ally may be near the end of her life” was made in a large part by looking at SMA statistics in outdated medical books. When diagnosed at 5.5 months old, medical books said Type 1 SMA kids have a life expectancy of less than 2 years old. Ally just turned 8 years old on February 2nd and I know MANY Type 1 SMA kids in their teens. There are young adults in their 20/30s, with variations of SMA, who were originally diagnosed with type 1. The care and knowledge (in many areas) is getting better and better for SMA kids and young adults and this is why they are living longer, happier and healthier. I know over 30 children who have had spine surgery (a large number who travel from around the country for surgery in Cincinnati and Madison). Chicago is still growing in their care of SMA and I know they will continue to grow. We only have IL state insurance for Ally, so I don’t have the option to go elsewhere, but we are still exploring that slim option. We also wanted to stay in the Chicago area since the hospitals are great, Billy can continue working, we could be with our other 2 daughters, and have support of nearby family and friends. Ally is trached, but overall she is healthy and is doing really well. After our severe winter, she is back to attending school daily and we are getting out doing lots of things as a family. None of Ally’s current doctors have stated to me that they felt Ally was declining and close to death. We got approvals from all the departments needed at the new hospital to have surgery. Ally does need higher ventilator settings because of her spinal curve and lung shape due to SMA, but I have HIGH hopes for a long future with Ally (happy and healthy, without pain).
I am very thankful that the orthopedic surgeon will now reach out to the surgeons from Cincinnati, Madison and elsewhere. He is also going to reach out to Ally’s doctors from Lurie Children’s hospital who know her current medical status (although I need to make some new appointments with them since we haven’t seen most since early fall).
HELP Needed from other SMA Families — Can you PLEASE share your spine experiences?
Our orthopedic surgeon is very interested in learning more on SMA (and especially spine surgery for type 1/weaker kiddos since he has done spine surgery on type 2 SMA children). He will talk to other surgeons and asked me to share articles, research, and even stories/experiences from other SMA families. We plan to reconvene in one month to discuss possible surgery in IL or referral to go elsewhere (if we can find a way for a hospital to accept out of state public aide insurance). PLEASE, PLEASE, PLEASE, will you email me (tina@angelally.com) or facebook message me your child’s experiences? You can chose to exclude or include your child’s name. Please try to include type and severity of your child’s SMA, age of surgery, age now, degree of curve before and after surgery, type and number of surgeries, hospital, doctor (and maybe even doctor’s contact information), positive and negative experiences regarding surgery. How has spine surgery affected your child’s life? I really think this information can help many kids as hospitals and doctors expand on their care and options for SMA children. I will share it with our doctors and also in SMA support groups for other families on this journey making decisions about spine surgery. Please remember you can exclude or include your child/family name, but your input is SUPER important to help others. I GREATLY appreciate your time! If at all possible, I am going to try to collect these personal stories by May 10th or before.
Thank you again for everyone’s support, prayers and/or help! I have not given up and will continue to find the best care options for Ally to give her a happy and healthy life.
Tina
Email — tina@angelally.com
Ally’s website — www.angelally.com
Angel Ally Blog - SMA Type 1 