Life Rolls On: My Life With SMA

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I consulted my friend and co-worker who is a physical therapist and she provided some activities which we incorporated many times per day.

Spinal Muscular Atrophy (SMA) | Children's Hospital of Philadelphia

At 3 months, I realized that Ben's tone issues were not improving and seemed more concerning. I called to make two neurology appointments, to rule out any "scary stuff". I called our local early intervention team to schedule an evaluation for him….


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I felt so strange making those phone calls, desperate for answers. I thought that he might have extremely low tone hypotonia or cerebral palsy. I tried to prepare Mike that I thought there would be lots of therapies ahead, that he may not walk until at least 18 months. I talked with co-workers, saying that I just hoped it was nothing regressive. The wait for the neurology appointments to come ticked on, and meanwhile Ben had a cold which never seemed to go away.

He had noisy breathing. He had more leakage from the corners of his mouth when feeding. He also seemed to use his tummy a lot for breathing. All of these things we attributed to the low muscle tone. Our worry built as he approached 4 months. A few days after he turned 4 months old, on Wednesday February 2nd, , the day began as normal. In the afternoon Ben suddenly refused to take his bottle and was breathing with more effort then usual.

We had been suspecting reflux and I heard gulps like he was refluxing. I thought I would call the doctor in the morning and talk about medicine. Mike tried to take him for a drive to calm him to sleep as we assumed the reflux was bothering him and that maybe he was getting the respiratory virus the girls had dealt with the week before. When they got back from the drive Ben had never fallen asleep and in that time he had developed a fever of Mike took him to the emergency room at Children's St.

Paul while I stayed home with the girls. His breathing got more out of control and they had to put him on a ventilator…. Mike called me and told me about the ventilator and that the doctors were thinking there was some underlying condition going on. That is when the terror struck. As Mike's dad stayed with the girls, Mike's mom drove me to the hospital in the wee hours of Thursday morning, February 3rd.

I saw my baby lying sedated on the bed, the ventilator breathing for him, so helpless. In desperation and fear, I asked the doctor, "Is there any way this is just low muscle tone? She asked me if I had ever heard of it…. I had never heard of it in my whole life, not in college studying to be an occupational therapist, not in years of working with kids with special needs…until that morning before at work.

Gene Therapy for SMA Type 1: Evelyn's Story

The other occupational therapist in birth-3 had mentioned a new child she was going to be working with who had SMA. I now know that there is a reason I heard the word "SMA" that morning. As I heard it again with my baby lying on that hospital bed, I knew this was a devastating diagnosis.

Those hours through the night were the hardest maybe of this whole story. Not knowing for sure, dealing with the new realization that our baby may not live. The geneticist came on Friday and came to the same conclusion. SMA is a neuromuscular disease and is the leading genetic killer of children under 2. It occurs in 1 out of 6, births. It typically occurs when both parents are carriers. Generally the same type of SMA runs in a given family.

Ben had all the signs, and it was confirmed the next week when the blood test results came back. Ben was fighting pneumonia brought on by the parainfluenza croup virus. Babies with SMA are very susceptible to pneumonia. Despite our grief, we grasped onto the gift we hoped we were about to be given, more good time with our Baby Ben. Most of the doctors in the pediatric ICU did think he had a good chance of coming off the ventilator, beating the pneumonia, and going home for some more good days.

The nurses in the PICU were my confidantes. They listened for hours as we kept watch over sweet Ben.

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The chaplain found me almost every day it seemed, talked with me, prayed with me. I asked her what it would be like when Ben went to Heaven.

What causes spinal muscular atrophy?

She described it as being a holy time, special, sacred. I began to think of it as being like a birth, something bigger than myself, something I could never do alone but God would be with me. Those days by Ben's bedside were special to me because they were time I had with him, to hold his little hand, to sing to him, to pray and pray and pray for him.

The child life specialist was such a comfort to me. She helped give us the words for how to explain the disease to the girls, and for how to later explain the shortness of the life Ben would have. A friend connected with the national support group, Families of SMA, and found a mom who herself had a daughter with SMA Type 1 who was born and went to Heaven in She visited me at the hospital and I was so grateful for being able to talk to someone who really knew what I was going through and who had somehow managed to go on.

My sister and friend planned a benefit which relieved financial worries. So many people sprung into action to help us, with prayers, food, help with the girls, funds. We felt so blessed by everyone's generosity. Ben did come home, after several weeks of getting better from the pneumonia and having surgery to place a feeding tube in his stomach. Ben had lost some skills in the 3 weeks he had been dealing with the pneumonia and hospitalized, and with the progression of the disease.

He did not move his legs anymore, only his feet. He moved his arms from the elbows but could not use shoulder movement. Unfortunately SMA was one of those regressive diseases I had worried about.


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Ben came home with medical equipment feeding pump, pulse oximeter to monitor his oxygen saturation and heart rate, nebulizer for respiratory treatments, vibrating percussor wand and cough assist machine to get mucus out of the lungs, suction machine as he had lost his ability to swallow saliva, and bipap mask which he tolerated during sleep to help with breathing.

We had home nursing during the day and they, like the nurses in the PICU, were such blessings to us and to Ben, who loved them and shared many of his precious smiles with them. We had visits from the palliative care team from Children's, including a nurse, social worker, child life specialist, chaplain, and music therapist.

This team ensured comfort for Ben and for our whole family. In May the palliative care team arranged for me, through the parent to parent program of Children's, to meet another mom who had a baby with SMA Type 1 in She visited us, bringing food and gifts, but most importantly understanding. See more of Gwendolyn Strong Foundation on Facebook. Log In.

Life Rolls On: My Life With SMA

Forgot account? Not Now. Related Pages. Muscular Dystrophy Association Charity Organization. Celiac Disease Foundation Nonprofit Organization. American Liver Foundation Charity Organization. Ren Will Walk Cause. Pages Liked by This Page. The Keiki Paddle. The Friendship Paddle.

Breakthrough Prize to CSHL professor for SMA research

Rare Disease Day. Recent Post by Page. Gwendolyn Strong Foundation. But my gaze kept returning to you. I watched as you transferred your son from his wheelchair to a boogie board. I watched as the two of you took an end and trudged through the sand and into the water. In a sea of people splashing, I watched you out there with your child, navigating the waters, other people, and him.

I watched you, and it felt like home. I understood. You see I, too, have a very unique child.


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She died nearly four years ago, but watching you felt so familiar. I saw the way you studied his face closely, searching his eyes and sounds for non-verbal queues.


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