Our son, Derrick Ryan Salyers, was born at KDMC by c-section on October 16, 2003. He was a healthy looking boy weighing in at 9 pounds. He was took to the NICU because I had gestational diabetes and they needed to monitor his blood sugar levels. They also noticed that he was breathing too fast. He also had a heart murmur.
The next day, Dr. Rigby, the neonatologist, listened again for the heart murmur. However, this time, she heard a gallop sound so she ordered an ELG. She didn't like the results so she ordered an echo. Then, she sent for us to tell us the devastating news..... Derrick was born with Hypoplastic Left Heart Syndrome (HLHS). The left side of his heart didn't form. He was called a "blue baby". We were VERY SHOCKED! Our precious little boy looked so healthy. I had even had four ultrasounds during my pregnancy with no idea that anything was wrong. Hypoplastic Left Heart Syndrome is a very rare congenital heart defect. Only 3 out of 10,000 babies are born with this congenital heart disease each year. After she got him stabilized, I got to hold him for the first time until they were ready to take him to Kosair Children's Hospital. Dr. Rigby said that she was almost certain that Derrick was a candidate for the Norwood Surgery (which is the first of three open heart surgeries). This is VERY good if your baby is a candidate for the surgery because not all babies born with HLHS are even candidates for the three surgeries. When your baby is born with HLHS, you have three options; three surgeries in order (
We were given three options of where to send him:
We chose to him flown from KDMC to Kosair Children's Hospital in
Derrick had his first open heart surgery (
If we had given up on Derrick, I wouldn't be sitting here today holding him as I type. God works miracles! We don't know what tomorrow will bring or how long Derrick will be here with us, that is in God's hands, but we don't regret for one second choosing the option of surgeries for our baby boy. We have gotten to know his personality, his likes and dislikes, smiles, hugs, kisses, laughs, etc. We have gotten to see him take his first step. We haven gotten to hear him say that he loves us. We would have missed out on all of this and more if we had chosen to do nothing. Please let everyone know that if they find themselves expecting a baby with HLHS or have a newborn with HLHS that they don't have to give up. There is Hope for HLHS! Our son is living proof of that. To glance at him you wouldn't know he has HLHS until you look at his chest and his lips. We also were able to hold our son before the surgery.
Derrick is a happy two year old full of energy. He has to have several different therapies since he is a little delayed because of his surgeries and lack of oxygen, but he is doing well by the Grace of God and His wonderful heart surgeon's miraculous hands. He requires special attention and takes several different medications. He is also tube feed. He loves tractors, horses and other animals, trucks, tools, Elmo, Barney, Teletubbies, Wiggles, Jay Jay the Jet Plane Thomas the Train and lots of other things! He just started walking on October 27, 2005. We were so proud of him when he took his first step!
Derrick's third open-heart surgery, the Fontan, is scheduled for July 24, 2006.
Thank you for letting us share our son's story with you.
Tammy and Martin Salyers
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