An update from Rodney Massengale

On 1/25/06, my wife, Jamie, gave birth to our first child. Jamie had zero complications and other than the constant morning sickness, had a routine pregnancy. Olivia Rae was born at 6:50AM at Lakewood Ranch Women's Center and weighed in at 3lbs 9oz. Yeah, even the OB was surprised. They decided to transfer Olivia to All Children's that afternoon for precautionary reasons and to see if they could figure out why she was so small. We were told that sometimes they are just small.
On 1/27/06, an echocardiogram (heart ultrasound) was completed and Olivia was diagnosed with a Congenital Heart Defect called Truncus> Arteriosus along with a Ventricle Septal Defect (VSD) or more commonly known as "a hole in the heart." In a nutshell, your heart has a pulmonary & aorta artery leaving the top of the heart that takes blood to the lungs (pulmonary) & the body (aorta). This artery starts as one, and then splits around 8 weeks gestation. Olivia's never split. She had 1 "trunk" artery leaving the heart and then it split into the aorta & pulmonary. This caused blood that should go to the body, to go to the lungs and vice versa. Because of her lack of size, they wanted to wait as long as possible for her to gain weight before they repaired the defect.
After the heart diagnosis, they started numerous genetics testing. A week later, Olivia was diagnosed with DiGeorge Syndrome. This is a partial deletion of the 22nd Chromosome. This answered a lot of questions, her size, the heart, she has a low immune system, and her body does not produce calcium and numerous other issues that won't show themselves until she is older, like learning disabilities and behavioral problems. There are over 180 different issues that are associated with DiGeorge and varying degrees of each issue. No two DiGeorge kids are the same, so they cannot tell us what obstacles Olivia will encounter in the future.
On 3/7/06, weighing just less than 5lbs, Olivia had her first open heart surgery. Walking Olivia from the ICU to the operation room holding area has been the longest & shortest walk in our lives. I looked down at her and she had the look of fear, even though she had no idea what was about to happen to her. It is something that no parent should ever have to do. I would not wish that on my worst enemy. Then we had to walk out of that room with the fear that she may not be here much longer. The surgery consisted of disconnecting the pulmonary artery from the "trunk" and re-routing it to the left ventricle using a vein homograft. In addition, they patched the VSD. Olivia spent the next few weeks in Cardiovascular ICU recovering from the surgery and getting bigger.
On 3/30/06, after 64 days of ICU life, we left the hospital for the first time with Olivia. She weighed just less than 6lbs. She was on 10 different medications, she had to eat every 3 hours, no matter what and she came home with a feeding tube to assist us in her eating. Because of the heart issues and somewhat because of the syndrome, she did not have the stamina, or strength to eat a full bottle (which was only 2 oz) so we use a feeding tube to give her the rest.
As I write this, Olivia is 7 months old, weighs 10lbs 12oz and is thriving at home. We have a home nurse that comes by twice a week; she regularly sees a cardiologist, immunologist, endocrinologist, pediatrician, ophthalmologist, Geneticists, in addition to occupational, speech and physical therapists. She is starting to stand if you hold her hands and even talks to you if you let her. She definitely has a personality and is proud of it. She will need additional heart surgeries, we just don't know when. It could be next year, it could be several years. Only time will tell. Each day is an adventure with new discoveries and new fears.
You can read Olivia's entire story and see pictures of her at her own website. www.oliviarae.net
Rodney Masengale