How did you learn about your pregnancy and what was your initial reaction?
We learned through a regular test and were very excited to have a second baby!
When did you learn that Annette had a heart condition and would need open heart surgery? Can you explain what her condition is and how it is detected?
We learned about Annette’s heart condition a few weeks after she was born when we took her for her 1 month check up and the pediatrician detected a murmur. Once we took her to a cardiologist we found out that she had multiple holes in her heart (both ASV and VSD) and she needed an open heart surgery. Annette is now diagnosed with Bradycardia, TBI, Cerebral Palsy and Epilepsy.
What was recovery like for a baby who just had surgery? How long before you were able to hold her?
This is where Annette’s story begins. She was supposed to have a surgery and we were told she would have a 2 week recovery and everything would be done. The day after her surgery, Annette went into cardiac arrest and a team of doctors and nurses tried to revive her until the only option was to put her on ECMO (life support) which she was on for almost 7 days and was successfully taken off on 3rd try. As a result of her cardiac arrest, which lasted for nearly an hour, Annette sustained traumatic brain injury due to lack of oxygen.
Tell us the surgeons, doctors, and nurses how did they help you through the whole experience?
We will always be grateful for the wonderful team of doctors and nurses at the Levine Children’s Hospital especially to Dr. Kirshbom who performed her surgery and her cardiologist Dr. Sliz who is still to this day her doctor and he’s seen her grow from when she was 3 months old.
When did you know that Annette would need extra therapies and which ones have been the most beneficial?
We were told from different doctors what Annette will most likely never walk or talk and will always depend on full support. But she had the most wonderful therapists (PT, OT and Speech) who from the beginning believed in her and worked so hard with her and celebrated every little milestone like it was the biggest achievement. Not only does Annette now walk with mild assistance and talk but she’s also got a great sense of humor and a beautiful singing voice. She loves her siblings and her friends and teachers at school and her therapist at Handprints and Footsteps Pediatric therapy.
Do you have any suggestions or coping suggestions for other parents in your position?
My advice as a mom of a child with special needs would be to meet other families that are going through a similar situation or have a child with special needs because no one else, even your family will ever understand what you’re going through, unless they go through a similar situation. It takes a supernatural amount of patience and attention for a special needs child. And you the parent are the best advocates for them.
What was the biggest challenge that you had to face for Annette since being home?
Our biggest challenge through the years has been that we can’t do most things as a family that comes so simple to other families like going to a new place or traveling. We always have to make sure that it’s accessible for our family needs and will Annette be comfortable there. From all accounts, her heart is healthy and well post surgery. It’s her developmental progress due to the sustained brain injury that will be a journey for the rest of her life.
How did you hear about Bee Mighty and what made you apply?
As Annette grows, she hit a growth spur last spring and outgrew her AFOs faster then usual, but due to insurance policy she needed to wait about 3 months to get a pair of new AFOs and when we received that pair of AFO’s but the new pair wasn’t properly fitted which caused her pain to walk so she had to wait another 6 months to receive a new pair and Annette’s ability to walk depends on her braces. And that’s when we heard about Bee Mighty from Annette’s Therapy and they heard her story and blessed us with a grant to get her a new pair of AFOs which we are so grateful to have now and to see her happy and not in pain.
Any advice you would give another family going through the process? Anything that really helped you get through the experience?
One thing that helped us going through the hardship of having our baby at the hospital was holding on to hope that the Creator of the universe is in ultimate control over her life. God of the Bible is good and just in His dealings over His creation. We will forever be grateful that He used the hands of the sergeants, nurses, medical professionals and technology to prolong her life and continues to grant her progress through after care and therapy. To God alone be the glory.