Up with Down Syndrome

It had been five years since we had a child, and we were not planning to have more children. We already have two daughters, Lydia and Alecia, and that was enough in my opinion. I knew it was risky having a child in my 40s. However, I loved being pregnant, and my daughters kept saying, “We want a baby brother!”

I became pregnant and the baby was due in June 2009. When I had my first ultrasound, my husband, Alan, and I knew the child was going to be disabled. He showed some signs of Down syndrome: big toe separated from the other toes, loose skin on the back of the neck. The doctors noticed a hole in his heart as well. But a boy was just what the girls had asked for.

I was not surprised that he was disabled. However, I still shed a few tears for two reasons. First, I thought that Alan would not be able to do things with his son as he would with a typically developing son. I thought he would not be able to play baseball, or learn to ride a bike. Secondly, I have Multiple Sclerosis. It is difficult for me to go through the day sometimes. I occasionally joke to friends that I am a mother with a disability raising a child with a disability!

Tyler’s Story

Our son was born two weeks early on July 14, 2009. He was 7 pounds 3 ounces, and 19 inches long. We named him Tyler. Tyler needed to stay in the Neonatal Intensive Care Unit (NICU) for two months because of the hole in his heart. He would not take formula very well and had to have a breathing tube.

During the summer of 2009, H1N1 virus appeared on the scene. It meant only parents could grant permission to allow others to visit in NICU, and they allowed only two visitors at a time. In addition, every visitor had to scrub his or her hands for three minutes. Children under the age of ten were not allowed at all, which meant that Tyler’s sisters sadly could not visit. Halfway through his stay at the hospital, he caught the H1N1 virus. Not surprisingly, most of us in the family caught the virus, except for my husband. We all received treatment.

Once at home, Tyler needed oxygen and another tube for feeding, since he was not eating enough and needed to gain weight. Alan and I made a good team, putting the NG tube in properly. It was scary having to do this. What if we put it in wrong? We were lucky it did not happen. He also had to take medicine for his thyroid and breathing. It was hard to keep his medications straight every day.

Tyler’s pediatric cardiologist would check his heart every other month, and when Tyler was just four months old, the doctor decided that he needed heart surgery. The day we were supposed to leave for surgery, we received a call from the hospital. Tyler’s surgery had been postponed because two preemies needed heart surgery first. It was a month before we received a call to reschedule heart surgery. Tyler would go for pre-op December 16, and surgery would be the next day.

Things were very unnerving for me then. I could not sleep staying in the hospital room and was worried that something would go wrong during surgery. We met the heart surgeons who would perform the surgery. They seemed respectable and reassured us. The nurse said the surgery could take five to six hours. All we had to do was wait.

Alan and I both felt the tension of not knowing when the surgery was going to finish. Our impatience showed in our abrupt conversations with each other. We both thought we would have to stay at the hospital during Christmas. Finally, the surgeons came out and said the surgery went well. I could breathe again!

Since the hospital stay after surgery was supposed to be about 10 days, we managed to get a room at the McDonald House next door. We picked up the girls to stay there with us. Alan and I took turns staying at the patient room with Tyler and staying with the girls at the McDonald House. Tyler was discharged three days early on Christmas Eve. It was a miracle!

Thriving

The rest of his first year seemed fairly routine, as Tyler had occupational therapy and physical therapy visits at our home. We noticed that his right arm was weak and he did not use it very much. Physical therapy helped a little, but I insisted he get an MRI to see if he’d had a stroke. Finally, the doctors scheduled him for an MRI in Portland. The results showed he did have some injury to his brain.

In addition, his weight and height were below normal. This is not unusual since children with Down syndrome are usually shorter than normal. So, they monitored his diet, and how much he ate. Now he is eating a lot more and his weight has increased. His mobility includes rolling, not crawling. He can sure get around fast by rolling!

Despite the injury, Tyler has amazed everyone. While his development has been slow, he is developing better than many children with Down syndrome. Before I knew it, he turned two! This September Tyler started school in the Parent-Toddler Playgroup. It is only two hours Tuesday mornings. This is his way to socialize and learn about his peers, while also having a physical therapist available.

Tyler is progressing very well, and he always has a smile on his face. Now I believe that his father can teach him how to ride a bike and play ball with him. In fact, he can do anything he sets his mind to. And the girls love him and play with him. Lydia acts like a second mother taking care of him. We believe that Tyler completes us as a family; he is the glue that helps us stick together.