Mommys first time meeting baby
#Trisomy 13
On April 27th, 2012, our lives were changed forever. Born early at 33 weeks, our daughter Delainey was born.
She was born with a unilateral cleft lip and palate that had been undetected in ultrasounds. How you ask? Simple. She always had her hands covering her mouth. It was like she wanted to surprise us all. She was shy.
Hours after her birth she had been taken for numerous tests and many doctors came to look her over. They came back to us after about 3 weeks after her birth with a diagnosis of full/complete Trisomy 13 or Patau Syndrome. We now knew she the cleft lip and palate, her left eye was under developed, her heart had many defects, such as a large ASD and VSD and her left aorta was severely deformed and tapered off. She had large cystic kidneys and they were functioning at about 30% after birth. She also had a large bellybutton hernia and mild club foot.
It was because of all of these abnormalities that the geneticist wanted to test her for specific genetic disorders.
We were told that this happens in 1 in 10,000 live births.
That she would most likely live no longer than 3 months of age, if she even made it that long.
90% of these kids die within the first year of birth.
She would never walk, talk, sit, crawl, eat or breathe on her own. That she would cause stress and burden on our relationship and family and that she would live a very unhappy and painful life.
Normally we want our medical professionals to be right about everything but in our case I am so happy they were wrong. She wasn’t misdiagnosed, she is just defying the odds and proving every one that doubter her wrong. We’ve had amazing support from our community, our health professionals and our family.
If you have found our blog and are reading this, I encourage you to go to SOFT and share your story and meet other families. Its so important to educate ourselves.
You can go to SOFT here http://www.trisomy.org
You can also go to Delaineys personal day to day awareness page on facebook www.facebook.com/DelaineyLivingWithTrisomy13
I look forward to sharing her story with all of you.