Wednesday, September 13, 2006

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 (Norwood, Bi-directional Glenn, and Fontan), Heart Transplant, or simply do nothing, doing nothing was NEVER an option for us. Yes, we were told that the first surgery is the most critical....If they survive the first surgery, then survival rate gets better with the next surgery...However, they don't know how long these babies will live and some who have the surgeries may even need a heart transplant later in life or some other additional surgeries. They have to have EP studies or wear halter monitors occasionally to check their heart rhythm because they are more apt for their heart to get off rhythm.

We were given three options of where to send him: Louisville, KY, Ohio, or Michigan...

We chose to him flown from KDMC to Kosair Children's Hospital in Louisville, KY....Dr. Rigby made all the arrangements for them to come from Kosair and get him. She even stayed at KDMC until late that night to make sure he made it safely....He had to be put on a medicine called Prostaglandin to keep his PDA Valve open until they could do his Norwood surgery because this was what was keeping him alive. With this valve open, his blood was flowing backwards and keeping what little heart he had going. This valve normally closes three days after birth. While Derrick was on this medication, he couldn't open his eyes no matter how hard he tried. He would cry, grunt, and shake. This medication can also cause them to quit breathing so they gave him another medication to help him keep breathing...He was also on oxygen.

Derrick had his first open heart surgery (Norwood) when he was only seven days old! Derrick is also put on heart lung bypass during each surgery and put on a ventilator. We got to hold him before he had his surgery. Dr. Erle H. Austin III did Derrick's surgery. He is a wonderful heart surgeon! After each surgery, he has chest tube drains, pacemaker wires, and is still on the ventilator and lots of medicines. They have to wean them off. After the first surgery they keep their chest open until it they can safely close it without any complications and yes we did walk into the PICU room and see his heart beating inside his chest. He had to have a g-tube placement which is a feeding tube and a surgery called Nissen due to his severe acid reflux, severe gag reflux, and slow draining stomach. He had this done on December 1, 2003. They had to do this surgery as quick as possible because of his heart condition. His heart surgeon told them to get in there and out as quickly as possible. He still has this feeding tube without it he would not be here. He stayed in the hospital from his birth until December 8, 2003. His oxygen levels ran in the 70's after this surgery and they dropped in the 60's when he was upset. This is normal for a HLHS baby. Their oxygen levels will Never be 100. Derrick had a heart cath on June 7, 2004 and because his shunt was narrowing and his oxygen levels were in the 50's he was admitted to the Pediatric Intensive Care Unit and he had his second open heart surgery (Bi-directional Glenn) on June 9, 2004 at Kosair Children's Hospital in Louisville, KY. His oxygen levels ran 83 to 84 after his second surgery and that is what they still run today. He has a heart cath scheduled for March 28th at Kosair Children's Hospital to determine when to do his third open heart surgery (Fontan).

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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