by GOODly Women Guest blogger Melissa Moore
I never aspired to be an advocate.
I would have been perfectly happy having all my kids healthy, oblivious to the possibility that children can be seriously ill and even die. But being thrust unwillingly into the category of “Heart Mom,” and subsequently “Loss Mom,” fundamentally changes a person.
On March 5, 2011, our second child Greyson was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). He was 4 days old and had only been home with us for two days. We were at our local hospital that day for nearly six hours while they worked on him in the ER. We were not allowed in the room, but they put two chairs just outside the door for us so we could watch what they were doing. During that time we had two doctors come to us and tell us they were praying for Greyson and for us. We had a nurse ask if she could say a prayer there with us. I lost count of the number of X-rays he had in those six hours. As you can imagine with a 4-day-old, it was difficult for them to get a vein to give him meds, and they finally got one in his forehead. As we live in a relatively small town, he was going to be flown to a large city an hour away. Of course the staff was concentrating on our son and not on updating us, and when we saw one of the flight nurses gown up as if performing surgery, we were terrified. We later learned that the vein in his forehead had blown, and the flight nurse removed his umbilical cord to put a line through his belly button. She saved his life that day by doing that, and that line was used for medicines even in the few days after his first surgery.
I wasn’t allowed to fly with him to the Children’s Hospital at OU Medical Center, so we were called in to say goodbye to him before they put him in the incubator for transport. The flight nurses were skeptical that he could survive the flight as he wasn’t stable, but they couldn’t afford to wait any longer.
Once we arrived at the hospital, they gave us his diagnosis. I suddenly knew more about the anatomy of a heart than I even knew existed. My husband and I searched numerous Web sites about HLHS to prepare ourselves for what Greyson was facing. A child with HLHS only has the right half of their heart functioning. HLHS is one of the “critical congenital heart defects” (CCHDs), meaning that if treatment isn’t sought quickly, if will be fatal. With a set of three surgeries, though, babies can survive. Greyson was an amazing baby, and we are thankful that we got nearly six months with him. He did not make it to his second surgery, and died on August 26, 2011.
Shortly after his death, I heard about pulse oximetry screening, which is effective at detecting many of the CCHDs before a baby is discharged from the hospital after birth. I wrote letters to my state representative and state senator, was asked to be a parent advocate for pulse oximetry screening as well as a member of a screening and special services advocacy group with the department of health, and worked with the American Red Cross and other parents to get attention for screening.
The heart family community is close and very supportive, and I have met many of these wonderful people. Within our first week in the hospital, we were introduced to Erin Taylor, a seasoned HLHS mom whose son Henry has had a heart transplant and is going strong and about to be a teen-ager. I found a kindred spirit in another mom and pulse ox advocate, Shannon Miller, whose daughter Chloe had died from a CCHD in 2001, and we have worked together on projects over the years. Through the hard work and support of many, including a long list of other heart parents, pulse oximetry screening became law in Oklahoma in 2013. I was honored to be the parent to work on the pulse ox brochure that Oklahoma families get at the hospital.
Being a bereaved parent is complex. Our grief never goes away, never lessens. But it does change and can take on many forms. Part of that grief is wanting to make sure that people don’t forget about our child. My way of accomplishing this was to start a non-profit called Greyson’s Advocates. I developed a medical journal for parents who have a sick child, to help keep track of all the information that is given to them. Even though a parent might be new to the world of pediatric medicine, doctors, specialists, and nurses immediately start providing information. The journal has a place for keeping track of all that, including daily medical information (blood pressure, weight, and anything else the doctors might be monitoring for a specific child), a place to keep track of conversations with medical and hospital personnel, medicines, procedures, and doctors and nurses involved in the child’s care. There are even pages to make other notes, a to-do list, and a way to track visits and offers of help from family and friends. I have subsequently made seizure and feeding tracking forms which are available by request.
Greyson’s Advocates produces and distributes these journals, as well as offers support to families while in the hospital, returning home, or saying final goodbyes. Families receive meal assistance while in the hospital, and can also receive a hospital box with items to help make the stay more comfortable. We also have a limited number of grief materials for families.
We have a wonderfully supportive board of directors and terrific donors who work to ensure we can continue our mission to help these families. I feel very fortunate that I get to interact on a personal level with most of the families to whom we have sent a journal, and follow their child’s journey when possible. It’s not always easy on an emotional level, but the ability to help another parent in some way during their stressful experience makes me feel honored.
So, yes. I would have been perfectly happy to have lived a “normal mom” life. But the people I have met and the experiences I have had as a result of my beautiful son Greyson, and my advocacy efforts in his memory, are so very dear to me and priceless. It is at times very difficult, time consuming and emotional, but it is so worth it!
Melissa Moore is a wife, mother of 3, advocate and founder & executive director of Greyson’s Advocates.