Rebecca's Special Heart
John and Amanda Van Oss
2 Children - Annabelle (2 years old) and Rebecca ( 32 weeks as of 12/7/2015, not yet born)
Our Story for Rebecca
Sometimes words cannot adequately explain how one feels when you find out that you are expecting. I think this is true for both new parents and for parents who already have children. All the feelings are there. The joy, the excitement, the bliss, and yes even the dreaded ones "oh my... am I ready? " "will I get any sleep?" "will he or she be healthy?" New and experienced parents of all ages have a rush of thoughts and wishes running through their heads when the news comes. No matter how we frame our feelings, thoughts, worries, or wishes, I think in the end most of us have one especially important thought or wish. The wish for a healthy child.
This is where our story steps in. My wife and I have already been blessed with a wonderfully healthy, beautiful 2 year old girl named Annabelle. And so its not too hard to conceive that we might of had the thought of having another. So we did. When news broke we were both ecstatic to say the least. Time passed and we started the journey forward of doctors visits and ultrasounds. The typical routine.
Unfortunately this all changed during one of our ultrasounds. Up until this point we were seeing a high risk OB because our daughter, Rebecca, was measuring behind and my wife had some initial bleeding that was atypical. At first our concern for her size was not too worrisome as our first daughter measured a little on the smaller side but Rebecca was measuring 2 weeks behind. We had the ultrasound at the Perinatoligist office and the outcome was nothing we could have expected.
The diagnosis was an issue with her heart. Preliminary diagnosis from the ultrasound pointed to pulmonary atresia or pulmonary stenosis but it needed to be confirmed. Cardiologist specialist confirmed that our daughter has not only pulmonary atresia but also a small right ventricle. Known as hypo-plastic right heart syndrome.
The news was unbearable. The cardiologist told us that Rebecca would have 3 open heart surgeries. 1 in the first one to two weeks after birth, the second a few months after birth, and the last between 2-4 years old.
Time felt like it passed into limbo and we moved forward not knowing what to think or what to do. Rebecca continued to fall behind in size. The next step. Amniocentesis. Genetic testing.
The second wave of bad news. A genetic disorder. Trisomy 16. Trisomy 16 is not widely known. Most know of the big hitters, 13 (Patau's syndrome), 18 (Edward's syndrome) and 21 (Down syndrome). Trisomy 16 is rare because full trisomy 16 is incompatible with life. So we have Mosaic Trisomy 16. Genetic testing revealed that my daughter has no abnormalities (all 46 pairs of chromosomes are normal) which likely means that the genetic disorder is confined to the placenta (we will know for sure after delivery). This adds yet another wrinkle. The disorder can result in growth retardation. The likely reason my daughter is falling behind. A very unwelcome sign when your daughter has a heart defect and requires open heart surgery.
Fast forward to today (12/9/15). As of 32 weeks Rebecca has a strong heartbeat at ~136 bpm (I loving hearing it. Reminds me of galloping horses) and everything is functioning normally. The one caveat is that Rebecca is only at 2 lbs and 7 oz. So here we are. 7 more weeks to go and we are in the hospital. Time is not on our side.
This is the difficult part. As a father I want only the best for my children and I want to protect and provide them to the best of my abilities. But when it comes to my unborn daughter, Rebecca, I am powerless. All the strength that I possess cannot fix her heart or get the placenta working properly. All I can do is pray, hope, and have faith that the doctors that my family and I are working with will do everything that they can with their God given talent to help Rebecca.
And this is where I ask for help. My family and I need your support to try and provide Rebecca with the medical treatments she so desperately requires to live. Funds from this campaign will be used to help with medical costs (primary), travel expenses, loss of pay due to short-term disability (bills), and in the worse event funeral arrangements.
Its difficult to express how thankful I am for everyone's generosity, love, support, well wishes, and prayers. I can only hope that Rebecca will be able to one day repay the favor for the generosity of today.
Even as I write this I try to be optimistic but its hard. No parent wants this. And so that is why I ask that you please see my wife's blog so that you can know our story. She will be updating it as she has time and I will try to update this campaign regularly so that both new and experienced parents will know our story and people will become more knowledgeable about hypo-plastic right heart syndrome and the trisomy 16 genetic disorder. I wish all parents out there the best health for their children and I thank everyone for your time in reading about our Rebecca.
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