My Little Miracles

by Danielle Sciandra
(Staten Island, NY)

Twins with Big SIS

Twins with Big SIS name is Danielle and I was fortunate enough to live close to NYC, I had excellent care(so important) and two beutiful twin girls.

When my local doctor saw the twins it wasn't until 14 weeks...being that there was only one sac. I had ultrasound pictures from 10 weeks showing one, when I was told twins I nearly fell off the table. None of the doctors in my practice had ever seen a woman with this type of pregnancy. I immediately called Columbia Presbyterian which was about an hour away and went to see a doctor there.

When I learned more about MONO MONO twins I thought there was no hope and wanted to curl up in the corner and die! Then I realized I had to be strong for the babies to be healthy. My Perinatologist told me that IF I made it to 25 weeks I would HAVE TO be admitted into the hospital for constant NST's and ultrasounds. Then be delivered at 32 weeks. I agreed..leaving my 3 year old with my parents, and being an hour away from her and my family.

I ended up almost having to be delivered 3 different times because the babies were in distress. However, they would move and I would be sent back to my room. At 32 weeks I was put in high risk for 24 hour monitoring to try and prolong the pregnancy. That lasted 1 week and 5 days. There were too many distresses on the girls and we had to deliver at 33 weeks and 5 days.

Mia was born first at 4lb 1oz....Ava (4lb 5oz) got sucked up into my ribcage with no amniotic fluid around her and all doctors panicked..she was pulled out by her ankle 5 minutes later. They were in the NICU for about 3 weeks and considered "healthy" babies.

Unfortunately, they are now almost 20 months and not yet walking. I went to an orthapedist and neurologist. It turns out they have Spastic Diplegia and Distonia, a form of Cerebral Palsey dealing with high muscle tone and involuntary spasms. It is due to a lack of oxygen flow through the umbilical cords!!! Also, low oxygen from low amniotic fluid! Baby B had no amniotic fluid for 5 minutes.

MY QUESTION IS>>>DO ALL OR MOST MONO MONO TWINS HAVE THIS CONDITION IN SOME FORM DUE TO THEIR CORD ISSUES??? My twins used to arch their backs as infants whenever they were placed on their backs, which is an early sign of CP with high tone and they now constantly twist their legs tightly together to one side (scissoring).

Unfortunately my doctor diagnosed it as reflux(arching) and as normal for them!!! They could have gotten help much sooner. Please let me know if your twins have any of these symtoms. I AM VERY NERVOUS AND I HOPE ITS NOT TOO LATE TO HELP THEM WITH THERAPY.

Comments for My Little Miracles

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Nov 28, 2009
by: Leah

First off your girls are beautiful! I read your story and I'm so sorry that your girls were misdiagnosed. I teach special education and have worked with children who have all degrees of CP, and just from experience as long as you now know your girls diagnosis and you are getting them therapy then that's a step in the right direction. The sooner the therapy the better. Good luck, I'm sure you and your beautiful girls will be ok. Smile, keep up with your research and their therapy.

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