Caring for a Special Needs Child

Finding out we were expecting our third child left my husband and I elated. We were like all parents awaiting the arrival of our child. Our other two children were just as elated. My pregnancy was a normal pregnancy. I was sicker than I was with our other two children, but there were no major problems. When our daughter was born after only five hours of labor we named her Sarah Rebecca. The doctor mentioned that she was the most muscular baby he had ever seen. Sarah had full cheeks and had a chubby torso. Our other two children had looked the same. We thought our baby was perfectly healthy.

When Sarah was 9 months old she was not rolling over and had other gross motor delays, so we started researching why. What followed was months of appointments, tests, and waiting. I learned infant massage to try to loosen her stiff muscles as this looked like what was causing the problems.

Instead of crawling, Sarah learned to scoot on her bottom. When Sarah was 15 months old she finally learned how to roll over and started walking. She still had stiff muscles and had problems getting up and down. Sarah started having physical therapy each week to learn the skills she needed. During one of her sessions, the therapist noticed that her spine was crooked. Following x-rays and an MRI Sarah was diagnosed with Scoliosis which is a curvature of the spine.

Visiting a neurologist led to a diagnosis of Isaacs Syndrome. Sarah had not yet celebrated her second birthday. We felt like we had finally learned something. Sarah could take some medicine and would be able to have a normal life.

Growing and learning new things happened each day. Sarah had wonderful fine motor skills, but still lacked some gross motor skills. She could not climb up in a chair, or run with other children her age. This did not discourage Sarah though. She was a happy child.

On November 18, 2004 while at the pediatrician’s office Sarah’s lips turned blue. This had happened a few times before at home. When her oxygen level was checked with a pulse oximeter, it registered 85% oxygen in her body. Immediately she was placed on oxygen, and we were whisked away to the hospital via an ambulance.

Once at the hospital the tests began. Having discovered fluid around Sarah’s heart and lungs the pediatric surgeon performed an open lung biopsy on November 22. A chest tube was inserted to drain the fluid which stayed in place for 9 days.

On December 13 we were at Duke University for a heart catheterization. After this test the heart specialists determined that Sarah had restrictive cardiomyopothy, a rare condition in which the heart could not relax enough to allow for blood flow back out, causing fluids to back up into the lungs. Sarah also was diagnosed with Pulmonary Hypertension. Genetic specialists at Duke also said Sarah did not have Isaacs Syndrome which we had thought before. A muscle biopsy was performed to try and determine the cause of her stiff muscles.

During the next two months Sarah had pneumonia and more hospital visits. Sarah’s pediatric heart specialist told us that a heart and lung transplant was possible in the future. On January 4, 2005 a visit to the pediatric orthopedic specialist found that Sarah’s scoliosis was worse. Her spine now had a 23 degree curve. The doctor said he would wait until it got to a 25 degree curve to put her in a back brace because of her breathing problems. February 4, 2005 Sarah awoke with low oxygen levels. She was using her oxygen most days by now. Sarah’s Pulmonologist (lung doctor) suggested that a Port-a-cath be installed to better treat her. Another surgery followed that afternoon. The procedure went well. When Sarah returned to her room she was ready for mama to rock her. Around 4:30, she awoke ready to eat, play, and watch TV. The health care team implemented a Steroid treatment and Sarah’s oxygen level began to improve. For a short time, Sarah’s oxygen level reached 100%, but around 6:00 it started dropping.

The hospital staff tried several life saving measures, but they were unable to restore her oxygen level. About 7:30 while I was rocking her, the nurses asked that I lay Sarah on the bed to provide better access. Sarah looked up at me and said “No, mama, rock”. Rocking was Sarah’s favorite way of comfort while she was sick. I assured her I would stay with her and laid her on the bed. Soon the healthcare team removed the oxygen and started breathing for Sarah. They attempted in vain to install a breathing tube—Sarah’s airway was too swollen. I stayed with Sarah, holding her hand and rubbing her leg until God called her home.

The medical staff began emergency procedures to resuscitate her, but we all knew that Sarah was gone. Her heart was coaxed into beating again for a few minutes, but she had been too long without oxygen. It was some time before the physicians declared what the Lord and we knew. They finally gave up at 8:30—the end of a long, long day.

According to the autopsy, Sarah died of congestive heart failure. We still don’t know what caused her problems and may never know.

Although raising a special needs child can be a daunting task, it is also rewarding. Seeing Sarah roll over for the first time filled me with a feeling of joy even though she was late to develop this and other tasks. Our family learned patience through the time Sarah was sick. Waiting for doctors to call back with results of tests can feel like an eternity. When the Lord took Sarah to heaven, our family was there for support. My parents came to our house the next day to help clean and help visit with us as friends came by to offer condolences. When it was time to clean our Sarah’s clothes and toys, again my mother was there helping me with this task. My sisters are still close by when I need someone to talk to and remember Sarah with. My husband and I grew closer as we leaned on each other for support. Taking time to cry is normal and needed in the grief process. Our life changed with the birth and death of Sarah. I went back to school and became a nurse working in the same pediatrician's office that Sarah went to. Our children’s lives changed during this time as well. Having a sibling that was sick and then died caused them to grow up in many ways. They learned to deal with their grief and have even shared Sarah’s story with others. Caring for a sick child can take a lot of time during the day. Some days were filled with doctor’s appointments. I tried to schedule appointments during the morning so Sarah could still get an afternoon nap. Keeping a routine as close to normal helped although some days we did not get anything done except sit in the rocking chair. I would not change those days for anything.

Here are some websites for more information:
Baby Crowd
 Has a special forum for raising special needs children.

American Academy of Pediatrics
American Academy of Pediatrics has articles dealing with all aspects of children’s health.

If you find this site helpful or would just like someone to talk to please feel free to contact me: davepeck@charter.net.