February 30, 2000 we flew to Nashville, Tennessee to meet
with Dr. Bruner at Vanderbilt University. On the morning of
March 1 he confirmed Dr. Rodriguez's diagnosis. He explained
to us that we were candidates for open womb fetal surgery
to repair the spina bifida lesion. Even though this procedure
does not cure spina bifida, it intends to stop further nerve
damage to the spinal cord as well as to arrest, and in some
cases reverse, some of the complications caused by spina bifida.
From the first day when we saw our
daughter's heart beating on the ultrasound monitor, Angeline
became a real, living member of our family. Since then, we
were committed to do anything humanly possible to improve
her chances of having a better life. After carefully weighing
the pros and cons ofhaving the surgery, and after praying
about our impeding decision, we opted for going ahead and
having the surgery. We informed Dr. Bruner of our decision
and we headed back to Hollywood, FL on March 4.
After a couple of scary visits to
the hospital to take care of pre-term contractions, everything
seemed to be under control. We were approaching the average
gestational age at delivery for fetal surgery patients of
33 weeks and 3 days. On Monday, June 19, we went to see our
perinatologist. He had been concerned by Emily's low amniotic
fluid level during the last few weeks. After a fetal sonogram
and a NST (non-stress-stress-test) Dr. Rodriguez decided to
send Emily to the hospital to prepare for delivery for Thursday,
June 22. The amniotic fluid kept going down and the placenta
seemed a lot older than it really was and numerous calcium
deposits were clearly noticed. Angeline was going to be delivered
through a scheduled c-section at her 34 weeks of gestation.
Our main concern at the time was
Angeline's lung maturity. At 34 weeks some babies have already
mature lungs, but others don't. If Angie's lungs were not
mature by Thursday, she would need a respirator to assist
her breathing. Other potential complications were possible
due to Angeline's pre-maturity. Angie's fetal health was excellent,
but as Emily kept saying, she was living in a condemned building
and she needed to move out.
Dr. Juncosa, Emily's OB/GYN, allowed
me to be with Emily in the operating room during Angeline's
birth. What an experience! I took some pictures and got the
whole thing on video. I was there to see Angeline being born
at 8:47 AM, crying and moving her legs. Everyone in the delivery
room was so excited. It was history in the making, and we
were all there.
Angeline weighed 4 pounds and 3 ounces
and measured 15 1/2 inches. She was breathing by herself,
her oxygenation level was good, and got an APGAR score of
9. She even drank her first 40 cc of formula at the NICU.
By Saturday night she was out of the incubator and on Monday
she was discharged and came home.
We are all adjusting to our new life
as a family with our first born. Emily is recuperating from
her surgery and Angeline is adjusting to life in the outside
world. She is doing pretty good for a child with spina bifida.
She moves both or her legs, although her right leg seems to
be her "stronger" leg. She didn't need a shunt
after birth, but we need to regularly monitor her enlarged
ventricles for signs of progressive hydrocephalus. So far,
Emily and I are delighted with our
little angel and we thank God for having given us the opportunity
of partaking in one of His miracles. And we thank Him every
day for having given us Angeline Marie.
to read updates on Angeline...
to Spina Bifida
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.