Sophie was born at 37 weeks and weighed 5.3lbs and was 17 3/4” long. Labor was rough for her and she suffered mecconium inhalation. When she finally made her grand entrance in the world we realized her umbilical cord was knotted and wrapped around her neck. My midwife was very surprised at the formation of the placenta and the fact that it did not look normal. When I was in the first trimester of pregnancy I suffered a threatened miscarriage, I experienced bleeding and a lot of pain and was told to take it slow. We thought we would lose her but we prayed for a miracle and she held on, she is a fighter and has been from the moment of her creation.
At my first sight of her I knew something was not right. I was told everything was fine and that she was just very small but I knew, I felt that something was wrong. The first time she cried I said, “she sounds like a kitten meowing” but no one thought that odd except myself. She was taken away immediately because she was struggling to breath and not responding well.
Hours passed and I began to worry so I called the nursery, they told me they would call me right back. Than my pediatrician called me. He told me Sophie had trouble breathing and could not hold her temp so she had been transferred to the NICU (neonatal intensive care unit). I was horrified but somehow I knew deep down something was very wrong. Sophie developed pneumonia and sepsis (blood infection) within days, she could not breathe or eat on her own. Her temp was out of control, she was having unexplained tremors and too many other complications to count. She had a transfusion to clean out the infection in her blood, they told me if I had denied the transfusion she would not have survived. It was horrible to see her suffering so much.
I had no choice but to leave her and return home, it was devastating. No one knew what was wong and they just kept diagnosing more and more abnormalities. She had ultrasounds and dozens of tests that yielded no answers as to why she was not getting better or what was causing it all. It was so frustrating, there was no “why”. They asked to run a chromosome panel to check for any abnormalities at this point they did not know where else to look, of course I agreed. I had four healthy children I did not think anything would be different. We think if we do it all by the book nothing should happen, right? Wrong!
After weeks of no answers I had a breakdown that caused the NICU to shut down. When I brought up taking her to another hospital because they were incompetent I was threatened with social services. I was a determined mother and refused to allow my child to be treated like a ginnea pig and they did not like that. Later that evening she was transferred to another hospital 45 minutes away for (neurological evaluation). The other hospital had been warned about me, maybe it was because I called them out on not doing what they were supposed to be doing. In the end it was best to have her transferred. The new doctor that took over her care called me personally and explained what tests he wanted to perform and “why” which is all I wanted to know.
They honored my request to remove the feeding tube and allow her to bottle feed and to remove the oxygen. Within 24 hours she was on room air and 48 hours no feeding tube. I may not be a medical expert but I was sure able to pick up on what was affecting my child.
Within days we were given the horrific diagnosis of what my child’s life was going to be like; according to the doctors. We were told to take her home and enjoy the time we had because she only had a 25% chance of surviving past 2yrs old. And that If she did live she would not learn, she would not walk or talk and she would most likely be in a vegetative state.
Two doctors gave us the diagnosis of Cri du Chat syndrome that dark night. A female doctor who was there the night Sophie was born and a male doctor who had taken over her care. The female doctor was cold and had no regard for my “child’s life”, she handed me an internet print out with the survival percentages and pretty much dismissed our concerns after that. The male doctor stayed with us a while after and offered support, he could see our pain. We had built up a good relationship with him, he was cuban like myself so our traditions were similar. He took a moment to tell us that “he has seen miracles after no hope was given”, he put his hand on our shoulders and walked away.
At 5 weeks old we were finally able to bring our little girl home.
Where our journey together began….
My Dance in the Rain 