I wish I had known about medical futility policies before I delivered Mylah, but I can't go back. However, I can go forward and hope that this post reaches someone who needs it. There have been so many mothers who have educated me and given me direction during the first part of my journey, it's only right that I reach out to educate others who may be traveling the road I previously walked.
I want to ask these policy makers "What right do you have to determine who gets to live and who gets to die?", "What right do you have to say what's considered a "quality" life", "What right do you have to determine that the child would be better off by being denied medical care that could possibly prolong the life this child has been given?"
During a recent cardiology appointment I was advised by the physician that Mylah's heart defect was "huge" as he described. As he went on to detail the defects of her heart he indicated that he would not operate on her. When I asked "why?" he proceeded to advise "because it won't make things better", he would prescribe her medications to make her comfortable. He expressed that he wished it was something that he could do & that he was "sorry". I told him not to be sorry and that he could pray for my baby.
During meetings with physicians I have been told this same sentence a number of times. It's actually to the point of annoyance. What exactly won't get better? I really think that the physicians that I've spoken with don't really understand the actual QUESTION. There is a difference between HEARING and LISTENING.
I think that the physicians don't really get my point.
I know that Mylah has a chromosome abnormality that cannot be fixed. There is no medication, no vaccine, no type of therapy to fix what she has. Mylah has a AVSD & a VSD of the heart. If left untreated it could lead to death by heart failure. Yes, the description of her heart defect was told to my family and I almost 11 hours after Mylah's birth. Being told that once the blood in my baby's heart started to mix and her lungs begin to fill with fluid it would be difficult for her to eat. She would start labored breathing and her death would be something that would take a few days to complete; it wouldn't be sudden. The news drained the happiness from the room. I cried, Juwan, my sister Toya, & my mother cried, my father sat silent. Such a happy moment; she had survived being in my womb, she survived labor, She was breathing on her own and now, at THAT moment being told my baby who had since defied so many odds, would die of heart failure.
What I want the physicians to understand is that I'm not asking for them to fix Mylah's Trisomy 18. I want them to fix her heart. Give her a chance. Don't count her out because of her Trisomy 18. If the holes in her heart can be repaired then that gives her a chance at life and she deserves just that. Trisomy 18 should not be the "Do Not Disturb" sign on my child's life.
The cardiologist who told me that he wouldn't fix Mylah's heart really struck me. Not because he wouldn't operate on my baby, but because he greeted me by saying " God Bless You". I had never experienced a blatant acknowledgement of GOD from a health care professional up until that point. Most only said God Bless You or I'm Praying for You after they'd realized that we believed in GOD. After he gave me the news he asked me to meet him in his office so that he could give me his findings to provide to Mylah's pediatrician. When I walked into his office I was ataken back. His office walls were covered with pictures of babies, children, and young adults. All his patients that he operated on. The walls were like a timeline for some faces from birth to adulthood. Pictures and letters thanking this physician for fixing their hearts which were at one point broken. One young lady explained that she was going on to college and thanked the physician for allowing her that chance. I began to feel sad. I knew that Mylah's face would never be added among the other children who had been given a chance at life. I noticed faces of Down Syndrome children who he'd operated on. Down Syndrome is also known as Trisomy 21. What made those Trisomy children any different than Mylah?
As we sat in his office, a Hebrew song played a lady sang with a calming angelic voice. The music soothed me. I knew the words she spoke had something to do with GOD. The doctor turned around in his chair and faced me. Once again he said that he was sorry and that he didn't know why GOD does the things he did. He expressed that Mylah was a beautiful, precious baby and that she was lucky to have me as her mother. I began to cry. I told him that she defied odds and that I served a GOD who performed miracles. He pulled a handkerchief from his pocket and dried his tears. He then asked if he could pray for her. In Hebrew and English he prayed for Mylah. I thanked him and he let me sit in his office until I was ready to leave. I knew from his tears, and from his greeting that he wanted to help Mylah. I knew that his faith was strong in knowing that GOD had Mylah in his hands. But his affiliation to the hospital would not allow him to operate on my baby. I knew that the hospital had a very biased opinion as it related to treatment for Trisomy 18 babies and heart surgery is not a option at this facility for Mylah. I needed to look elsewhere.
I started looking in other places for physicians who would treat my baby as they would any other baby without Trisomy 18. I found some solace in her pediatrician; who after the 1st visit referred her for specialists visits. One referral being to the cardiology department at one of the most renowned hospitals for children in the state. Our initial consult is set for this Friday. As we make the 45 minute drive to our destination I ask that you keep our family in your prayers.
I want Mylah to be given an opportunity to live. To live the life that has been given to her. I don't want her to be handicapped by her Trisomy 18 diagnosis. If the medical community continues to handicap our children just because of their diagnosis they will never see what our children are capable of. Then how will we be able to move forward with trying to better the treatment and care given to our Trisomy children. "Incompatible with Life" this was once the description given to babies with Trisomy 21-Down Syndrome & look how far individuals with Down Syndrome have come. They were given a chance, physicians listened, parents spoke out, & their children fought. Hopefully, one day soon we will see a change in the way our Trisomy 18 & 13 children are treated.
Click the link below to read about others are fighting to have hospitals disclose their Futility policies to patients.
Rebekah Faith - Redefining 'Incompatible With Life': Medical Futility