We didn't know about Summer's diagnosis before hand, neither that we had ever heard of trisomy 13. During a non-stress test at the doctor’s office, Summer’s heart rate was so low so I was rushed to an ultrasound in the next room where we found that she is under some kind of stress. The doctor told us go straight to the hospital and you will be there faster than an ambulance because the baby have a
n hour at most. Miss Summer was born 20 minutes from us waking into the hospital, and the reason for her stress was that the umbilical cord was wrapped around her neck 3 times very tight, basically the cord was strangling her. When she was born, she had an extra digit on each of her extremities and that was the first surprise for us. She was rushed to the NICU at the children’s hospital. When she was 5 days old we had a phone call in the evening from her doctor telling us that the genetic testing came back positive for trisomy 13, this was my first time hearing the word trisomy. All night my husband and I were on the internet trying to understand what trisomy is and how it affects her. I think this was the saddest day in my life! I was learning that my new baby may just not survive, but then I found this site Living with trisomy 13 and had a little hope. The next morning the doctor meets us in the hallway of the NICU and asks what we know about trisomy, and then briefly explains that Summer’s chance of life is very slim and tell us that we have to make some decisions. I ask what/ he says that best for Summer is to pull her breathing tube out and let her go in peace. I couldn’t believe my ears, and I asked why? He said that she will not live so why to torture her. I said, she is a preemie baby and almost all preemies here are on ventilators so why you don’t want help Summer. I asked does she have any other problems with any of her organs that are life threatening? And his answer was no. Her dad then said she deserves a chance for life like all these other babies and we will help her to get it. This when we knew how hard the road ahead of us will be, not just because of our little sweet heart’s health but we realized how the doctors feel about this kind of diagnosis and what it will take to convince them at every step along the way to help and treat Summer and not her trisomy! When, Summer was 6 months and 3 weeks old, she was eating on her own, breathing on her own, giving us the biggest smiles, recognizing us and our love to her. Is she behind on her developments? Yes. Does she has some health issues that keep rising along the way? Yes, and we are getting the doctors to work on them one at the time. Was it hard to convince the doctors at CHKD to operate on Summer? Yes, it was, but we talked them into it, it took time but she was doing fine and there were no other reasons the doctors can give us for not operating on Summer than that she is trisomy 13 baby. As of date, and we were told over and over she will not survive anesthesia or any surgeries. She had an incarnated umbilical hernia repaired. And extra digits removed. She has multiple surgeries for her eyes because of glaucoma in her both eyes that was neglected by the NICU doctors as Summer eyes were never checked after birth even if that is a standard procedure of this hospital’s NICU, as a result, we are not sure how much vision does Summer has left but will know by time. She also had problems with her urinary system, she had over 10 surgeries for her kidney, and she is doing fine now. Summer obviously has her own plan and schedule of doing things, but she want to live and we will help her with the grace of God to have a good quality of life for as long as she need to. It has been very hard on our family, all the sleeplessness nights, doctor visits, hospital stays, but the love we have for her and the lessons we have learned from this little soul are invaluable. As of now 2015, Summer is over 3 years old and have great health.
