A Mother’s Perspective on Scoliosis Surgery

By Tammy White

Scoliosis surgery.  We had been used to hearing these words for quite a few years.  Frankly, they scared us.  We fought so that our daughter, Isabelle, would not have to experience the reality of these words.  We thought if we just worked hard enough or tried enough therapies we would avoid the need for scoliosis surgery altogether. Eventually, however, we came not to fear it, but to welcome it as a way to improve our daughter’s quality of life.

Life for Isabelle has always been a little different.  She was born with Merosin Negative Congenital Muscular Dystrophy.  Isabelle developed scoliosis early in life, due to her weakened muscles.  For the first few years, the orthopedic doctor just kept an eye on the degree of the curve and the shape of her ribs.  Once she hit her first big growth spurt, however, her curve changed from thirty percent to fifty percent very quickly.  It was then that we started discussing the different options for surgery.  We knew that this would be a big surgery for our little girl, as her weakened respiratory system was another factor we would need to take into consideration.  The doctors talked of the VEPTR, fusions, and rods.  All of these options were overwhelming, to say the least.

Isabelle’s physical therapist had known of other children, similar to Isabelle in function, who used a TLSO (back brace) for part of the day, especially when fatigued.  This back brace would allow Isabelle to still use what muscle she had, but also help stabilize the curve.  We talked the doctor into letting us try this, to hold off surgery as long as possible.  I really do believe this helped us hold off on surgery for a few years, and gave Isabelle support, which slowed to progress of her curve for some time.

Last spring, we knew we had reached a point where we could no longer put off the surgery.  At 7 years old, Isabelle’s curve was now at about 85 degrees and we felt that it was time to go ahead with the surgery.  We researched our options and spent some time talking them over with the orthopedic surgeon.  We decided it was too early in life for her to get a total fusion, as this would not allow her to continue to grow normally.

We decided to go ahead and let the doctors attach one growth rod to her spine.  They would fuse a few vertebrae together at the rod attachment points and she would need to continue to wear her brace after surgery.  This rod could be lengthened for a number of years, as long as it continued to correct the curve.  Also, this option meant that additional, small surgeries would be required to lengthen the rod a few times a year.  She would also require one additional major surgery to perform a full fusion.  These were all things we felt we could handle, and decided the growth rod was the best option for her.

One of the biggest fears we had going into major surgery was that Isabelle would have trouble coming off the ventilator, as this is not uncommon in children like her.  The doctors anticipated that the surgery would last about three hours.  I walked with Isabelle into the OR and held her hand while they gave her laughing gas and put in her IV.  I held her hand as she fell asleep.

When I finally left the room, I went for a walk and cried.  I knew she was tough and we had been through so much with her, but this was different.  I prayed that God would be with her and the doctors.  We waited.

After what seemed like an eternity, the doctors came to tell us that everything went fine and she would soon be in recovery.  We were all so excited and relieved.  She had made it through without any trouble and had come right off the ventilator as well.

Isabelle was in a lot of pain when I first went in to see her, which the doctors were trying to control.  It was hard to watch her suffer so much.  I felt powerless.  Then I saw her body.  I was amazed at the difference.  It was unbelievable how much better and “normal” she looked.  I knew right then, despite the pain she was in, we had made the right choice!  I was so glad that we had gone through with the surgery.

Isabelle spent the first night in the PICU and then another 6 days on the regular floor in the orthopedic wing.  Recovery was tough.  She was in pain and it was hard for her to get comfortable.  But still, every time I saw her body, I knew we had made the right choice.  She spent the next six weeks or so recovering at home, during which time she had to lay down frequently.  When I thought that she may never be able to sit up again, she suddenly started sitting up, for the whole day.  It was a change that came seemingly out of the blue, and from then on she really did not have much pain at all.

We do have to be more careful with her now.  Since Isabelle is completely non-ambulatory, we had to be very careful about how we carry her.  We also have to be careful to not to bend or twist her.  She is sensitive about having her back touched anywhere near the rod.  You can feel it right under her skin.  She does still wear her brace most of the day, every day.  I feel this protects the rod even more and helps provide her with added support.

While the toughest part for me was watching my daughter in such pain, unable to help, looking back I am absolutely certain that electing surgery was the right choice for Isabelle.  There are risks of infection with the rod, but we have had no trouble with that at all.  Her incision site healed very nicely and she has already had two more lengthening procedures, in which they make another small incision right on top of the existing one.  Recoveries for these lengthening surgeries have been very minimal, and the last one she was able to do outpatient. We go in every three months for an x-ray and then schedule a surgery if needed.   And we will continue this route until her back stops responding to the lengthening.  We look forward to the rod working for Isabelle for many years to come, so that she can continue to grow.

 

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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