Angeline's Story

 

On 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, so good. 

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. 

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-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.