Summer

SUMMER ~ FULL TRISOMY 13 ~ BORN: OCTOBER 11, 2011

Summer was born almost 6 weeks premature with an emergency c-section.  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 an 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 Livening 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! Now Summer is 6 months and 3 weeks old, she is eating on her own, breathing on her own, giving us the biggest smiles, recognize 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, Summer had already had 4 anesthesia for 3 different surgeries and 1 MRI, but we were told over and over she will not survive anesthesia or any surgeries. She had an incarnated umbilical hernia repaired. She had 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/has problems with her urinary system, she had one surgery to put stint into her right kidney to release build up pressure, and she still have 2 more surgeries planed for the upcoming 2-4 weeks to work more on her bladder and kidney. 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.

We hope these stories of children with trisomy will inspire you. From cleft lips to contagious smiles, group of families are here to offer you support as you begin your trisomy journey. It seems we only hear of the problems that come with a child having Trisomy . There is so much more to these sweet lives. Each day the living children bring joy to their families as they accomplish simple tasks or reach a milestone, the angels remind us that life is short but a blessing all the same and they will forever be engraved in our hearts. Be sure to check back for our next story or update and until then....Embrace life one moment at a time ~  Vanessa BACK TO LIVING MIRACLES PAGE