Johnathan M.'s Story: Parent's Letter Project Cerebral Palsy- Jonathan’s mom

Dear parent of a child born with the umbilical cord wrapped around his/her neck,

On June 8, 2010, we were sent to our local hospital in Northern Virginia to be induced because Johnny was late. Everything about the pregnancy was normal, there were no complications until we got to the hospital. They placed the fetal heart monitor around my stomach and heard that my unborn son's heart rate was in the 60s. I was rushed into the operating room to have an emergency C-section and that's when we found out that Johnny had the umbilical cord wrapped around his neck three times. The first few moments were agonizing until I finally received the news. My son was alive, but barely. He was floppy and barely breathing on his own. Within an hour after giving birth, we were told that Johnny would need to be transferred to Children's National to be placed on the total body cooling (therapeutic hypothermia) protocol because they suspected he suffered pretty severe brain damage.

One of the hardest things to do is to say goodbye to your newborn child when he is rushed away to another hospital, while you are stuck in a different hospital because you just gave birth and aren't allowed to leave. I did find comfort knowing that I could call any time of the day to receive an update on Johnny's condition. The doctors even called me when there was something important to discuss. I remember one call from the neurologist to make sure I was ready to deal with the reality of the situation. I know that call couldn't have been easy for her, but it was obvious that Johnny was not doing well.

When I got to the hospital, Johnny was three days old and was still on the 72- hour cooling (therapeutic hypothermia) protocol. It was hard not being able to hold my child and seeing him hooked up to so many wires. We found out later from the EEG that Johnny had more than 40 seizures the first 48 hours of life. The seizures were due to the swelling in his brain. He also had to have a blood transfusion because his platelet count was extremely low. In addition, he had to have help breathing. Seeing those tubes going down his throat was scary.

On day 10 an MRI was done to find out how extensive the brain damage was. Unfortunately, we did not receive the best of news. Johnny had moderate to severe damage to his thalamus and swelling of his white matter. The doctors tried to answer all of our questions but they couldn't answer the one important question we had, what does that mean for his outcome? Only time could answer that question. When he was 21-days old he was released from the hospital without any drugs or monitors, which was a miracle. He didn't even start eating by mouth until he was about 18-days old.

Johnny will be two this coming June, and he has now been diagnosed with cerebral palsy. We still don't know his outcome. He can't talk and he had to get a G Tube to help him get enough calories. He can't walk on his own, roll over, or even sit up for longer then a few seconds, but he can smile and laugh at the world around him. His favorite activity is pulling hair.

We continue to go to Children's about three to four times a month for physical therapy (PT) doctor visits, clinics, and procedures. We are blessed that we live so close to a wonderful facility that caters to children. The one thing that amazed me most about Children's is that they realize that when a child is in the hospital, so is the parent. When Johnny was in the Neonatal Intensive Care Unit (NICU) he was in a single room that had a chair that pulled up to a bed. The nurses did everything possible to make sure you were comfortable. Also during the tough times, we had people visiting us, including another parent that previously had a child in the NICU who was there for emotional support to other parents. We had a place to shower and wash our clothes for free (which is something you don't really think about). It's those little things that mean a lot when your world has been turned upside down and you just want your child to get well so he can come home.

When Johnny was first taken into the hospital we were asked if he could be a part of a total body cooling (therapeutic hypothermia) study. We gladly accepted the invitation. This was a very heart-breaking time for us that fortunately does have a happy ending. Our son is home with us. We hope that by doing this study more parents are able to take their children home with them as well.

Sincerely,

Jonthan's mom, Jeanine


Treatment Team

Invest in future cures for some of life's most devastating diseases

See other ways to give

Run or walk with us on September 13th and help local kids!

Race for Every Child Logo Register now