Being pregnant can be one of the most exciting moments in a couple’s life. It can also cause extra anxiety with wanting to make sure the baby is healthy and well. Stephanie George was an excited mom-to-be but due to an insurance problem, was unable to get ultrasounds during a part of her pregnancy. When she finally did, she received troubling news.
Doctors told her that the baby growing inside of her had many things going wrong.
“It was at this appointment when they told us he most likely would have some sort of syndrome, and we had ‘no choice’ but to continue with the pregnancy. I remember feeling angry at that, ‘no choice but to continue.’ As if they had already deemed his life to be unfit to continue if we were earlier on,” Stephanie shared in an interview.
Her baby was said to have a hole in his heart and other complications as a result of Double Outlet Right Ventricle (DORV), Tetrology of Fallot (TOF), Ventricular Septal Defect (VSD), and Pulmonary Stenosis.
The day came when Sebastian was born, weighing in at only 3 pounds, 14 ounces.
“I heard three things when he was finally out: ‘He’s here!’ ‘He’s breathing,’ and, ‘He has a TON of hair!’ What a joyful moment, ” Stephanie recalled. “And I say moment – because the joy only lasted for that long. Within minutes they were inserting a breathing tube, and then after that, the cardiology team took him away while I recovered. We had no idea what the future looked like, and nothing could have prepared us for the trauma after trauma we lived for the next 100 days.”
After Sebastian’s birth, Stephanie and her husband were given news over and over again that he would not be alert or have a real life. He had procedures done and was finally labeled with Cornelia de Lange syndrome. Because of this, he is deaf, maybe bind and won’t be able to walk or talk.
The family has decided to stay positive on the good they see and what their baby can actually do instead of what he is not able to do.
“They didn’t tell me his smile would light up any room. And that his personality would be so healing to anyone who gets to meet him, even strangers. He has a way of making people feel at peace. They didn’t tell me about all the knowledge I would acquire caring for him. And they definitely didn’t tell me that he would teach us everything we never knew we needed to learn; like patience, understanding, gratefulness, humbleness, inclusion, gratitude, selflessness, and to never ever take one single day for granted,” Stephanie shared.