Sam & Alex Have Spinal Surgery

Sam and Alex (age 6 in May 2011) have SMA Type 2. Their mother Sarah describes her experience of their spinal surgery.

When you have children with a disability, you soon become used to the rounds of appointments, pieces of equipment and surgery. As a parent, it’s gruelling to go through but sometimes you can lose sight of the fact that actually, it’s not physically happening to you, it’s happening to your child or, in my case, children. I sometimes forget that it’s not me that can’t walk, it’s not me that has to be washed, dressed and fed, and it’s not me that has to have surgery to have my spine straightened; it’s my children. But what’s worse? Going through it or watching your child go through it? I don’t know if I can answer that.

Sam and Alex were born 7 weeks early in May 2005 with no concerns until they reached their first birthday when neither could walk, weight bear or sit unaided. Eventually in November 2006 they were diagnosed with Type 2 SMA. Readers won’t need me to explain what this means. We have moved house twice, the last time to fit our extra-long wheelbase Motability vehicle on the drive. We have two of every piece of equipment you could imagine, and are currently waiting to have our garage turned into a big bedroom and our dining room into a bathroom, so the boys don’t have to be carried upstairs. The boys have at least one appointment a week and I cringe every time the post comes or the phone rings because generally it’s, yet another health professional wanting to make yet another appointment. But the surgery; that’s another story. 

Sam and Alex first saw Mr Mehdian at the Queen’s Medical Centre, Nottingham, when they were 3. They both wore lycra suits to help prevent their spines from getting worse (for those of you whose children wear a body brace, the suit is like an all in one swimsuit worn under the clothes). Mr Mehdian suggested that they might need surgery by the time they were 7. That’s okay then, 4 years to get used to that idea…NOT! By the time Alex was 4, his spine was at a 65 degree curve and Mr Mehdian put him on the waiting list. The 'letter' came in May 2010 with surgery scheduled for July. I cried for the rest of the day. Then it was cancelled and rescheduled for September. At the time part of me was relieved to have longer to get used to the idea but part of me just wanted it to be over. How do you explain to a 5 year old child what is going to happen? Try to keep it simple and age appropriate, but tell the truth. 

I had spoken to another 'SMA mum' who lives locally and she gave me a blow-by-blow account of her son’s surgery. She said it would be the worst day of my life and nothing she could tell me would prepare me 100% for how I would feel or how Alex would look. She was right. Alex had no comprehension of what was happening and was in very high spirits. On the morning of the operation, Ian, Alex’s dad, kept sending me to make cups of tea because I kept crying. Ian went with Alex to theatre while I sat in the ward wondering if I could stop the whole thing and whether I would see my baby alive again.

Then the waiting…We had something to eat, a cuppa, a walk up the road, another cuppa, a sit in the car park watching the world go by, another cuppa, then at 3pm we could wait no longer and went up to the parents’ room in ICU. Only about an hour later the doctor came to say that the surgery was over and all was okay; the surgeon was finishing off and Alex would be on his way up in about half an hour. That came and went, so did an hour. Then the doctor came back to say Alex was having a transfusion because he had lost some blood but he was okay.

Eventually at nearly 5.30pm, Alex appeared and nothing really could have prepared me for how he looked. Tubes everywhere, drains from the wound, a massive dressing covering his tiny, skinny back, the ventilator breathing for him, a swollen face. We were sent off to get something to eat and when we returned, although the ventilation tube was still in his throat, Alex was breathing by himself. We went to bed in the parents’ suite feeling a little relieved. At 6am the following morning we were called as Alex was 'awake'. He was still sedated but fighting it and trying to pull out the tube. The tube was eventually removed and the doctors and nurses kept telling us how strong he was... How could that be? He has SMA, that makes him weak. But strong he is, and tough and brave.

Alex lost 50% of his blood post-surgery, hence the transfusion (oh and did I mention he had antibodies in his blood so at 10pm the night before the surgery, more blood had to be fetched from Sheffield). He has a titanium telescopic rod (so no additional surgery to lengthen the rod) from the base of his neck to the top of his bottom and rods pinned to his pelvis to prevent rotation. 24 hours after surgery he was moved to the High Dependency Unit and was asking for sausage sandwiches.  24 hours later he was back on the ward with no ventilator, no pain relief, no tubes and no curvature of the spine. He was admitted on the Wednesday, had surgery on the Thursday and was home by the Tuesday. He had 7 weeks off school, had a week of half days and then went back full time. He is 3 inches taller than Sam, has better use of his arms and hands and feels stronger. He has never complained about his back hurting, his leg sometimes aches but that is “positional” and nothing to worry about. His confidence and social skills were a little low to start with but he has now caught up with his reading and writing and is as chatty and mischievous as ever.

And now Sam. Surgery is scheduled for 28th April. When the 'letter' came, I didn’t cry this time, I was relieved and although not being complacent, I am not so worried about this operation. Sam has asked questions and Alex has answered them; what better than first-hand experience, although generally he says “I don’t know, I was asleep”. Sam wants to be as tall as Alex and the surgeon has said this will happen. Sam though is a different kettle of fish, more emotional and sensitive, so I fear his recuperation will be longer but he may surprise everyone. We will know when he is better though, because he will be back to his usual 'talking non-stop' self.

As for Mr Mehdian and his team, words cannot express how we feel, it’s a privilege to have one of the top spinal surgeons in the country carrying out this life changing operation on your children. And what a humble man, he will not accept thanks, instead saying it’s down to his team.

So is it worse for your child or worse for you? Worse for your child of course, but many lessons can be learnt from children. Major surgery and blood loss, and home in under a week ­- how many adults would be like that? I know I wouldn’t be. I know one thing though, I would happily undergo surgery twice to prevent my children having to go through it.

This article first appeared in the Spring 2011 edition of our ‘Inspirations’ magazine