Grandson
I am writing this letter to let you know how CHD can affect all family members. I have learned more about the heart and about CHD than I ever wanted to know. My youngest daughter gave birth to a beautiful little boy on October 2, 2008. We knew beforehand that he would be born with a congenital heart defect.
In April 2008 my daughter was to have an ultrasound to determine if she was carrying a boy or girl. She invited me to be there and we were so excited to discover we would have a little boy join our family of girls. I noticed that the technician spent a lot of time on something she noted as the HRT. My daughter and her husband had an appointment to see the doctor and I left to buy some little "boy" things. I received a phone call and my daughter was sobbing saying there was something wrong with the baby's heart. She had an appointment the next day with a high risk obstetrician. I went home that night and looked up everything I could find on heart problems in infants. I was shocked to see how prevalent the problem was, but was still in denial that her baby was not healthy. After all, I had never known a child with any kind of serious health problems. I guess I am very naïve. We arrived at the appointment and another ultrasound was done. The doctor confirmed there was a problem. He was not sure what it was, but the baby would probably not make it full term. We left the office in a state of shock. These things happen on TV, not in real life. She was told to come back in a week and a pediatric cardiologist would also meet with them. The cardiologist said it was still early in the pregnancy, but he thought the baby had hypoplastic left heart syndrome. Another month goes by and she sees the cardiologist again and he confirms his original diagnosis of HLHS (one of the most serious forms of CHD). After weekly doctor visits, it is time for this precious life to be brought into this world.
On October 2, 2008, this gift from God was born "looking" perfectly healthy. He was taken away and mom and dad weren't able to neither see nor hold him. They brought him to the room and we were able to ooh and aah over this precious life that God had given us to take care of. This baby had heart surgery at 3 days old. When we saw him after the surgery, we saw more tubes than baby in the bed. My heart just ached to see this little fellow going though so much. He left the hospital 5 weeks later. Because he was not able to attend daycare, dad quit his job and stayed home while mom continued to work and keep insurance benefits. Although this family now only has one income, the bills continue to arrive monthly and on top of that the doctor bills and medication bills continue to come in. This precious little fellow had open heart surgery again at 4 months old and will require at least one more surgery. He requires regular doctor visits and medication and will for the rest of his life. Only God knows what the future holds for this little guy, but it is my prayer that through research CHD will be a thing of the past.
We thank God for giving us this little "superstar" to love and take care of and for the team of doctors who work so diligently to care for him. You wouldn't think there was anything wrong with this little guy until you open his shirt and see a 6 inch scar on his chest.
God has been with us throughout this entire journey and I know we would not be able to get through this without His constant presence. I know as parents my daughter and her husband worry and agonize over the health of their child, but as a grandparent I not only cry for my grandson but for my child who has to live with this worry and stress daily.
I am asking you to please spread the awareness of Congenital Heart Defects. According to the March of Dimes, CHD is the #1 birth defect affecting 25,000 babies per year in the U.S. alone. Help us get the word out to as many people as possible so that money can be raised for research and these little ones can grow up and have a chance at life.
Sincerely,
Gale Bagwell (Proud Grandma)