On September 7, 2008 - a miracle was born:
Grant Domogala entered this world.
And our family's lives changed forever.
He was born seemingly healthy and happily after a beautiful pregnancy and birth. The joy that overwhelmed his parents - Jessica & Justin - came to a crashing halt when a doctor noticed a strange murmur sound when listening to Grant's heart just a few hours after he was born. He was rushed to the Pediatric Cardiac Intentsive Care Unit at Strong Memorial Hospital in Rochester, NY for more tests...
The Devastating Diagnosis:
Tetralogy of Fallot with Pulmonary Atresia & Hyptertension - a severe Congenital Heart Defect. They found a hole in his heart between his right and left ventricles. Grant is also missing a portion of his pulmonary artery; his right ventricle is deformed and his aorta arches backward and is in the wrong place entirely.
Oh my. Our hearts were heavy but Grant’s heart was broken.
His future seemed bleak - doctors kept saying:
this is not repairable.
there is no cure.
we're so sorry.
he’ll need many surgeries.
Doctors performed open-heart surgery to stimulate his pulmonary vessels when Grant was 3 weeks old. After the surgery, doctors had little faith that these vessels would actually grow strong enough to endure another surgery. He came home – with a purple scar down the middle of his chest – doctors said:
you need to take your hope & reality & find a balance.
enjoy the time you have.
he won’t make it to his 5th birthday.
Then, at 8 months, doctors attempted another open heart surgery to place a conduit connecting his Right Ventricle to his Pulmonary Artery...Unfortunately Grant's hyptertension was just too severe to complete any more repair.
THEY COULDN’T DO ANYTHING ELSE.
His recovery was difficult. He was hospitalized for over 2 months - machines helping keep him alive - 2 hours from his family's home. It was agonizing.
We kept praying.
Grant finally came home - and he thrived. He grew stronger, and stronger. Our prayers were working. He continued to see his cardiologist, experimented with different drug therapies, underwent cardiac catheterizations to open up vessels and to stent arteries. He kept fighting & we kept praying. The prognosis still seemed unchanged, doctors continued to tell us:
a total repair is not possible.
his hypertension won’t allow us to close the hole in his heart.
with his hole open, his other organs will begin to fail.
it's just a matter of time.
Grant became our family's HEART WARRIOR. He kept fighting, we kept praying. He got stronger and stronger. He turned FIVE.
Earlier this year, lung tests showed an IMPROVEMENT in his hypertension and the possibility of surgery to COMPLETELY REPAIR HIS HEART was on the table. Finally, we felt something we hadn’t experienced in a long time:
hope for Grant's future.
In the Spring of 2015, Grant will undergo his 3rd open heart surgery to repair his broken heart – something 5 years ago doctors never believed was a remote possibility. At 6, this heart warrior has endured more than most of us ever will in a lifetime. This high risk surgery is BIG–Grant and his family will travel hours away from his home. He will likely spend weeks in the hospital, his parents must step away from their careers to be at his side, and his 2 sisters will need to continue their schooling and be cared for. So much to consider. So much at stake.
Grant is our warrior so let’s be his: we’re raising money to help cover the costs related to this upcoming surgery and allow his family to be at his side the entire time.
- Beth Luoma
- Blum Family
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