Makenna's life has been a miracle from the start. Through a series of complications with the pregnancy, I was only one mile away from Hershey Medical Center when my water broke on May 1, 2013. I was referred to the Maternal Fetal Medicine group at the hospital a couple weeks earlier, but we lived two hours away. I happened to be staying in Hershey with my mother at the time. After arriving at the hospital on the ambulance, the doctors saw that I was bleeding a lot. The placenta had started detaching and the baby's heart beat was dropping. I was rushed into a surgery room for an emergency C-section. In under 10 minutes, I was asleep and Makenna was out of me in three minutes. She wasn't breathing, they had to resuscitate her twice but she survived. She was 3 pounds 6 ounces and 15.5 inches long. I woke up a couple hours later, very groggy. Ken had gone to see Makenna and came to tell me she was OK. I could tell he wasn't telling me everything, but was too exhausted to press the issue...
The next morning, Ken explained that Makenna had some physical characteristics that indicated she was not completely healthy. The following week we had a meeting with the neonatologist and the geneticist which confirmed our fears....Makenna was born with trisomy 18, Edward's Syndrome. She has an extra chromosome 18. The doctors began telling us the awful statistics, 50% of the babies born alive with this syndrome die in the first month and 95% die before their first birthday. Trisomy 18 is considered by the medical community to be "incompatible with life". Actually most are not born alive so Makenna was already a miracle because she was alive. The doctors gave us the option to take her off of the ventilator and let her die peacefully. We could also do every measure to keep her alive, but they gave us no hope of her having a life with quality. Her body won't develop and most likely will be severely physically and mentally handicapped.
The next morning, Ken explained that Makenna had some physical characteristics that indicated she was not completely healthy. The following week we had a meeting with the neonatologist and the geneticist which confirmed our fears....Makenna was born with trisomy 18, Edward's Syndrome. She has an extra chromosome 18. The doctors began telling us the awful statistics, 50% of the babies born alive with this syndrome die in the first month and 95% die before their first birthday. Trisomy 18 is considered by the medical community to be "incompatible with life". Actually most are not born alive so Makenna was already a miracle because she was alive. The doctors gave us the option to take her off of the ventilator and let her die peacefully. We could also do every measure to keep her alive, but they gave us no hope of her having a life with quality. Her body won't develop and most likely will be severely physically and mentally handicapped.
I was devastated, my worst fear seemed to be coming true. I never thought I could handle loosing a child. How can a mother decide when and where her child is going to die? It is an awful power and I didn't want it. After much crying and praying to my Heavenly Father, I realized that God gave her precious life to me and allowed me to have her alive. Her life was in His hands. I do not have to choose. She will be with me until God calls her home.
Ken and I decided we would not take her off of the ventilator. She was just as well off as any of the other babies in the NICU. Any of the others would die if you took them off of the ventilator, with or without the extra chromosome. However, we also don't want to keep her alive at all costs just for life. We have decided to do the least invasive measures first and to take each day and decision at a time. As long as we are trying to make her comfortable and she continues to do well we will continue to fight for her life. However, if we start trying to save her to postpone our grief, it will be time to let her go...
Brienne, I wish that I could hold you both. How beautifully you tell Makenna's story.
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