twice to resuscitate her two pumps of the air bag. And then I was rubbing her chest and I just kept asking her, ‘Please breathe, please breathe. And she let out this small cry and nurses and everybody in the room were just crying and yelling! It was the best feeling ever.”
But Mylah would have a very hard road ahead of her. She had a very severe hole in her heart and the doctors at Mina’s hospital refused to operate because of her Trisomy-18. They sent Mylah home to die. But Mina and her husband would not accept that sentence on their miracle baby. “We found a pediatric cardiac surgeon [Dr. Richard Ohye] who was like, ‘Whatever you want to do, I’ll support you guys.’ He approached her way different [than the other hospital], saying ‘We know the statistics but we’ve seen where children have beaten the statistics. If you want surgery for her, we will do that.” Baby Mylah went into heart surgery on July 5, 2012 and survived. On March 23, Mylah will celebrate her first birthday.
After the one-year celebration, the Perkinses plan to take Mylah back to the hospital she was born in and show the doctors that she survived. “My plan is to tell them, you cannot treat the disorder. You have to treat the child. They’re not doing that right now. It’s a hard path but parents need to know Trisomy-18 babies are surviving if you let them.”
Today, Mylah breathes with the help of a tracheotomy. She has round-the clock nurse’s care and a feeding tube in her stomach. Both Mina and her husband went through four weeks of training to care for her. The Perkinses have had electrical upgrades done to their house to support the mini Intensive Care Unit they have had to put in their home. But through all of the difficult life-changes, Mina, a part-time student and full-time worker, still has hope. “I don’t know what’s in God’s plan,” she says, “but every day that she breathes is another odd that she’s defied. We still get the negativity from different people, but I still believe Mylah is a miracle, that she has a purpose. She’s not how I pictured her or dreamed of her, but she is exactly how God has designed her for me and she’s perfect.”
"We treat her like a normal baby because she is our normal baby. She is the way she is supposed to be. Our normal baby. She smile she laughs we can’t hear her. She’s the happiest baby. She doesn’t’ cry and when she does that’s how we know something is wrong with her. I’m just amazed by her she just gives me so much strength...I think God shows you to be more and more appreciative [when so many children] have mothers whose husbands have left them because they can’t take it...I was very thankful for [my husband, because] when I wasn’t strong, he was strong for us..."
Before this journey I can say my faith was not as strong as it now. I was brought up in the church....[At one point] a voice said to me “I chose you to be Mylah’s mother because I knew you’d be strong enough to handle it. I knew you wouldn’t kill her like other people may have.” It was my confirmation as to why I struggled to get pregnant, why Mylah has this disorder and it was like okay, "I got it. " And I could accept it. You look at yourself like I’m not strong. I don’t know how I’m making it. All my discussions with God, He heard me."
Brooke Obie writes the award-winning blog DistrictDiva.com. Follow her on Twitter @BrookeObie.