Mylah Perkins wasn’t supposed to be born. The OB-GYN told Mina Perkins as much during her 19th ultrasound where she and a few members of her family had gathered to find out the sex of her baby.  After three years of trying to conceive, Mina and her husband were finally pregnant. She told, “It was a total surprise because we had wanted it for so long and when we finally decided to stop trying and just enjoy each other, I became pregnant. It was a really, really happy time.” She’d scheduled the gender reveal to coincide with her birthday, as present.  But Mina noticed that the ultrasound was taking longer than usual. “The [technician] kept acting funny; he was really quiet, going in and out of the room. I knew something was wrong.”  She was dazed when the gynecologist finally explained to Mina and her family that the middle part of her baby’s brain appeared to be missing. The baby’s hands were clenched.  These were signs of the life-threatening chromosomal disorder, Trisomy-18, that causes 50% of babies diagnosed with the disorder to be stillborn.  Only 10% survive to their first birthdays.  As an afterthought, the technician told Mina, “I’m pretty sure it’s a girl.”

Four days later, on Mina’s husband’s birthday, two doctors confirmed for the expecting parents that their baby girl had Trisomy 18.  One doctor Mina describes as “so negative. He was monotone. He said ‘The baby’s fate is sealed.’ That rang out for me. We’re sitting in his office and I’m just wondering ‘How did I get here? I’m supposed to be happy and you’re telling me my baby’s going to die?” Her doctor explained that there wasn’t any point in continuing ultrasounds because if the baby didn’t die in the womb, she would die shortly after. “He never addressed her as Mylah, he always called her ‘the baby.’”  The doctor explained to Mina her options. When he spoke about the abortion procedure – that he would stop the heart but she would still have to deliver, something moved in Mina. “The whole time I was pregnant, I never felt Mylah at all. But when the doctor started talking about abortion, she kicked me! That was just my confirmation from God when she kicked. We believe in God we prayed for this baby for so long. At that moment, don’t care about no clenched hands, I don’t care what type of brain defects she has, I was not going to end her life. When God decides to take her life then I’ll let Him do that, but I don’t have the right to take her life.”

The doctor was skeptical of their hope and left them with a genetic counselor and a social worker who offered them grief, loss and support resources including a book of poetry from mothers who had lost their babies or had aborted their babies. “I’m looking at [the social worker] like, ‘I haven’t lost my baby! Why would you give this to me?’ For a couple weeks I was in a really, really dark place.”  Finally, when a hospice organization contacted her, Mina had had enough. “I told them, ‘I don’t want anybody around me who isn’t positive. I’m having this baby and I have faith and hope and whatever is going to happen is going to happen, but I can’t have anybody negative around me.”  The hospice organization fully supported her, telling her, “As long as Mylah has a heartbeat, you celebrate her.” Mina was encouraged and bought premie baby clothes (9 out of 10 Trisomy-18 babies are born premature) and furniture and went ahead with her baby shower.  

Though the hospice organization provided the Perkins family with a great deal of support, the hospital where Mina’s baby received her diagnosis continued to prepare for the worst, even as Mina carried Mylah past full-term.  “The doctors put me in this large suite with a jacuzzi and the nurses brought [me and my guests] bagels and pop and I realized they were being so nice because they were prepared for death.  The doctors took a long time giving me the medicine to induce and even as I was having my contractions, no one [on staff] was in the room with me.  Then, a neonatologist came in just to tell me, ‘If your baby is born without a heartbeat, we will not resuscitate.’ It completely ruined my birthing experience because I believed I had done everything I could to bring Mylah into the world and I thought they’d do the same. I just prayed she would be born alive. I just wanted to meet her living.” 

Surrounded by her husband, family and church friends who were praying the whole time, Mylah Perkins was born alive after 41 weeks and 3 days.  “She was over 5 pounds! The doctors said Mylah was the biggest Trisomy-18 baby they had ever delivered.”  The birth was not without complications. “She did have trouble breathing and they bagged her 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 Follow her on Twitter @BrookeObie.