Part Three of the Protecting Every Little Heart Blog Series

written by Melissa Moore

On March 1, 2011, I gave birth to our second son, Greyson. After a fairly normal pregnancy, labor & delivery, we had a beautiful, apparently healthy baby. We were released to go home on the 3rd with an appointment to go back to the hospital on the 5th for a weight check. On the 4th I began to get worried because Greyson felt very cold. He felt warmer after skin-to-skin time and being swaddled in two blankets. His skin looked a little mottled, but we assumed it was because he was cold, and we thought we remembered his brother’s skin looking the same. As the time for the weight check drew near on the 5th, as I was getting a clean diaper on him I noticed that the mottling had gotten worse in just a few hours and was almost purple from his bottom down. By the time we got to the hospital he was purple from the neck down. The nurses rushed around him to help him and discovered his temperature was 91.7. Fearing it was a virus, the staff quickly moved us to the ER to prevent exposure to other babies. The six hours spent there are mostly a blur of finding someone who could come get our oldest son, of being sat in chairs outside Grey’s hospital room, of the stream of doctors, nurses, and X-Ray techs. We were told many times that it didn’t look like he’d make it, and even more times that the nurses and doctors were praying for us and him. Not long after the flight nurses got to the hospital, the vein they had been using was lost, and one of the flight nurses saved his life by placing an umbilical line which was used until his surgery. Our son was flown to a hospital an hour away. We were not allowed in the helicopter with him, and that was the longest drive of our lives. When we got to his PICU room at the children’s hospital, we were told he had Hypoplastic Left Heart Syndrome (HLHS), which basically meant he only had the right side of his heart. What there was of the left side wasn’t working. Since his defect wasn’t found until he was four days old & in distress, his body’s organ systems had started shutting down. We had to wait about 20 days for his first surgery because all of those organs had to have time to recover.

The typical treatment for HLHS patients is a series of three surgical procedures over three to four years: the Norwood, the bidirectional Glenn, and the Fontan. Because of the condition Greyson was in, he was not a candidate for the Norwood, and his doctors decided to perform a hybrid procedure to “buy him time” so he could get bigger & stronger before undergoing a second procedure which would combine the Norwood & Glenn. The hybrid procedure went well, and after about another month in the hospital, we were able to take him home the night before Easter. HLHS and other heart babies don’t necessarily grow like other babies. Grey’s weight gain was slow, but typical for HLHS. He was a happy baby and otherwise healthy. His appointments all went well. He was scheduled for his next procedure in early September.

He had some swelling that didn’t go away when we increased his diuretic. One of the cardiologists had me bring him in on August 8th for an exam. While there, he had some blood in his diaper. We were admitted to the hospital. After a few days on the general cardiology floor, I had him sent back to the PICU because he was turning blue and we weren’t getting help as quickly as I felt he needed. He was in the hospital for three weeks, and had a cath lab procedure each of those weeks. The final cath procedure on August 24th was geared at getting him ready for transplant. During that procedure his heart stopped. By the time the staff got the heart-lung bypass machine and put him on it, he had been without oxygen to his brain for an hour and a half. He was successfully weaned from the machine on the 25th, but never woke up. He was removed from the remaining machines and medicines on the 26th after family and close friends had a chance to say goodbye. His dad & I held him until he was gone.

A short time after Greyson’s death, the recommendation that newborn babies have a pulse oximetry screening before discharge was released and was talked about in the media. I asked my doctor who to talk to at our local hospital, where Grey was born, to discuss implementing screening. I emailed and was told that, in part because of what happened with Greyson, their board was beginning the process of adding pulse ox screening for newborns. The woman I spoke with kept me informed of the process the entire time, and less than a year after Grey was born, all newborns were being screened.

I also wrote to my state senator and representative about making a law to implement it statewide. The senator’s staff person did a lot of checking and was told by the state department of health that they were beginning to work on the issue. Within a short time I was helping the department of health, and am currently a member of their Screening and Special Services Advisory Group. Toward the end of 2012 the American Heart Association began the process of getting legislation introduced requiring pulse ox testing for newborns. They included many heart families in the process, including ours. The bill passed and was signed into law in 2013.

When I went to our local hospital in September 2013 to give birth to our daughter, we were touched by how many of the staff members remembered us and Greyson. The most special thing for me, outside of our daughter’s birth, was when they handed me the pulse ox informational brochure I had helped create as part of the SSSAG. I was told the brochures had been delivered the week before and they were instructed to make sure I was the first person to receive one. I’d like to add that our daughter passed her pulse ox screen with flying colors.