Caring For Our Daughter Born With Spinal Muscular Atrophy: One's Family Approach

We were going to have a baby!

My wife Zelda, water had broken that night and off we went to the hospital as planned. So, my wife, my parents, and I crammed into my car. Off we went to the hospital. It was Valentine's Day February 14, 1974.

At the emergency entrance of the hospital, the nurses greeted us and ushered my wife into the labor wing. The rest of us went into the waiting room. Excitedly, we were awaiting the anticipated news.

Not one, but two!

After a couple of hours in labor, the nurse came out and told me that Zelda was going to have a Caesarian Section. The doctor said that the baby was too large to deliver. About 2 hours later, the nurse came out to tell us everything was going well as planned and that we had a beautiful new daughter. Hence, we were overjoyed! Quickly, the nurse disappeared for about five minutes.

Subsequently, she came back to the family with a big smile on her face. Then, the nurse announced that she had a surprise for us. She beamed that there was another baby inside! Surprisingly, they were born two minutes apart.

The nurse told us that we had a healthy baby boy! “Twins??”, I yelled in disbelief. Simply stated, we had no clue that we were going to have twins! In addition, the obstetrician had no idea because all he heard for nine months was one heartbeat. The reason was that their hearts were beating simultaneously with each other in unison.

We named our children, Jessie and Kane.

Our daughter's delayed development

Several months later, we noticed that Jessie was not meeting the same motor development levels as her brother. We told the pediatrician about this, and he remarked that they were preemies. "We should give Jessie up to a year to catch up," he said. Therefore, we did.

She was developing slower than Kane. Then, we were referred to a teaching hospital that treated muscular dystrophy children. As a result, Jessie was diagnosed with spinal muscular atrophy.

Juggling schedules and babies

Both Zelda and I were working full-time. Who was going to take care of the children when we went to work? We were lucky to have my parents living nearby. They were a great help to us in taking care of the twins. My parents watched the twins in the mornings so that we could work modified schedules. My mom was able to give them breakfast and put them on the school bus. She then returned to our house to be there when the school bus returned. I started working from 6:30-2:30 pm. My wife worked from 730-3:30 pm. Additionally, most times we were there when the bus arrived home.

My parents were dedicated to helping us take care of Jessie. My mother helped do activities of daily living with Jessie. They were a godsend with their endless love for the twins which was mutual. Additionally, they helped us through good and difficult times.

Modifying our activities

Jessie was included in many family activities such as taking her bowling and letting her push the bowling ball down a specially designed ramp that was strategically placed for her to get strikes! In the winter, we went as a family to the ice-skating rink, and we ice-skated with Jessie. She was on the ice in her umbrella stroller guided around the rink being pushed by me.

It was important to all of us to have a happy family experience and make sure that Jessie got physical, emotional, and social support from her nuclear family. Additionally, Jessie wanted to be as independent as possible. She went to the movies and ceramic classes with her friends. However, we were with her in the movies, sitting several rows back, out of the way, just in case she needed us.

In sum, Jessie and her friends felt that she was like all her girlfriends and schoolmates, except that she was not able to walk. However, Jessie was thought of by all that she was an intelligent, fun-loving girl and was not defined by her spinal muscular atrophy.

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