Giselle Meyer's Story
Giselle was diagnosed with an unbalanced right ventricle at 20 weeks into the pregnancy. This prevented the left side of her heart from forming properly, which then resulted in the lack of oxygenated blood to her body. This is very similar to HLHS (Hypoplastic Left Heart Syndrome), so the recommended treatment was the same as a child with HLHS.
HLHS can be treated in two different ways; the first is a series of three operations called the Norwood, Glenn, and Fontan procedures. The second and newer approach consists of the Hybrid procedure, modified Glenn, and Fontan. The Hybrid procedure is less invasive than the Norwood and doesn’t require the baby to go on heart-lung bypass. This is important because the operation is done in the first week of life and newborns cannot tolerate going on bypass as well as older babies. In theory it offers better long term cognitive results, although there is no proof yet since the operation is fairly new.
Giselle was born at Evanston Northwestern Hospital on April 22, 2008. After birth, she had her first surgery at Children's Memorial in Chicago on April 29th. She recovered from surgery and came home two weeks later. Over the next 6 months, we made bi-monthly trips to Children’s for echoes and ECG’s so they could keep a close eye on her. While it was a lot of work, we cherished every moment with her. She developed as any normal baby would, hitting her milestones, and began to bloom into a beautiful and wonderful little girl.
On October 27th, she went back in for her second surgery (The Glenn) and even after a 15 hour surgery, she pulled through. Since our home is 50 miles from the hospital, we rented a condo so we could be close to her as she recovered. The first week post surgery went well and she was recovering as planned. One morning, we received a frantic phone call from the nurse who informed us that Giselle had a sudden drop in her oxygen levels and had to be put on ECMO bypass. They performed an operation in the cath lab with limited success shortly after that. 17 days later she had another operation to put in a shunt to help blood flow to her pulmonary arteries. This was a very risky surgery and her last chance to survive, but she made it through and was miraculously able to come off of ECMO.
Over the next two weeks, she continued to struggle. Her oxygen levels were marginal and she needed a large amount of support for low blood pressure. She eventually began to get worse, so she went back to the cath lab for another operation. During the operation, they were able to get very clear pictures of her pulmonary arteries. That’s when they discovered many collateral vessels forming off the pulmonary arteries. These vessels exist in every person, but because of very high pressure in her pulmonary arteries, more and more blood forced its way through these. They grew larger and stole more and more blood from her heart. This is blood that recirculated without being oxygenated.
After the cath operation, she did not make any improvements and had to continue maximum settings on medications and life support. At this point, she had a partially collapsed lung from being on bypass for so long, in addition to kidney failure. She also had a build-up of lactic acid in her body, which signaled her organs were shutting down. We were approached by the doctors once again about their fear that she would not pull through this time, and it was evident that she would not recover. They had done everything they could do to help her.
Family and friends had been praying around the clock, asking for her to be healed. Even though we had envisioned other plans, it seems our prayers were finally answered when God took her home with Him. Giselle left her little body and failing heart behind and joined God in heaven on December 18th. While she was not able to get past the final obstacles, she surpassed everyone’s expectations time and time again. She touched the lives of so many people, many whom she never met. We find comfort in the fact that she’s no longer struggling from health issues and even though her physical body has left us, we know that we will meet up with her again one day. Most importantly, we had grown even closer to God through all of this and were thankful that He had blessed us with this precious gift for 8 months.