To the Editor:
My brother and his wife were both born and raised in this area (Monroe & Derby), and are now raising their family here. Two and a half years ago, Nicole was pregnant with their first child. As most parents, PJ and Nicole went into their 20 week ultrasound with anticipation, hoping to find out if they were having a boy or a girl. Unfortunately, during that scan, they received the devastating news that their daughter had a condition called Hypoplastic Left Heart Syndrome. (Basically, a half of heart).
This is a prenatal diagnosis that 30 years ago was considered incompatible with life. In fact, even today, it is a diagnosis which many OBGYNs and specialists urge termination of the pregnancy.
But my sister in law and brother chose to give their daughter, Isabella Faith, a chance at life. So they have had to travel to NYC (from Connecticut) for the remainder of her prenatal care and birth. Once Isabella was born, she would face three staged heart surgeries. One when she was just days old, one when she was 5 months old and now her third (between 2 and 3 years old). The goal is the make her half of heart function as a whole heart, providing oxygen rich blood to her entire body. The process is hard, scary and involved many doctor visits.
My brother and his wife were told the defect was like a lightening strike. Chances of happening twice were slim to none. So when they went for their 18 week anatomy scan on their second child, you can imagine how shocked they were to find a problem with this baby's heart. Not just any problem, the same exact diagnosis. They sat in the specialist’s office holding their year old daughter who had already been through 2 difficult heart surgeries, and again they were urged to terminate.
This time they considered. (I encourage you to read the full story of their difficult decision on her fundraiser / blog website:https://www.giveforward.com/fundraiser/y2t2/isabella-ava-s-heart-fund?utm_source=giveforward&utm_medium=email&utm_campaign=donation_notify_oganizer )
Long story short(er) J… After many prenatal visits to NY, in November of 2012, Ava was born at Morgan Stanley Children’s Hospital. Within 3 days, she had her first open heart surgery and at 5 months old had her second.
As I write this, my brother and sister in law are in New York Morgan Stanley Children’s Hospital with their 2 year old daughter, Isabella who just recently underwent her third and final staged open heart surgery. It has been a difficult recovery for her and there were many scary moments as her body adjusts to the new structure of her heart. She still has a little ways to go, but things are finally starting to look good in her recovery.
For the last two and a half years, my brother and sister in law have been warriors for their little girls. They have been sacrificing everything to give them a chance at life. Regular drives to New York, weekly visits from nurse, bi-weekly and monthly visits to the cardiologist and pediatrician. The medical co-pays and expenses have been huge not to mention the physical and emotional toll on them as parents.
They have never complained or asked for help. In fact, most people who look at them do not have one clue of all that they have and are facing. Their love and dedication to their daughters has been inspiring to anyone around them and they are now ready to tell their story. I think your readers will be inspired as well.
If you met Isabella before her third surgery, you would never know that she had a half of heart (other than her occasional blue lips which is very common prior to the third surgery). She is smart, energetic, full of life, and a bundle of joy. Her energy levels would wear out my six year old daughter! Her sister, Ava (now 9 months old) is thriving, gaining weight and doing extremely well.
We have established a fundraiser website to show our love and support to this family dealing with not one, but two beautiful heart warriors. Nicole has posted several blog entries on the fundraiser site to tell the stories of their lives from prenatal care to now.
We want to show them that they are not alone! I believe many of your readers will be inspired by them, and want to help them! Please help us spread the word!
I’ve attached the link to the site where Nicole has finally shared her heart and their story.
Cindy Dachenhausen (Corbesato)