“I was too busy loving her to be too sad.”
Rebecca Curtis, 9/4/2015 to 9/5/2015, Trisomy 18, Millington, TN
I am a mom to three: one living daughter, Katharine, age 3 who lights up my world. I lost a baby to miscarriage in June, 2014. I had a baby girl, Rebecca, who lived for 12 hours. If life were fair, my kids would be 3, 1 and five months.
Right after Christmas last year, I discovered I was pregnant with my rainbow baby. I was so excited! Nervous, but happy too. Things started out normally, though we didn’t tell anyone immediately after losing the last pregnancy. I was a little gun-shy.
Around four months in, a routine ultrasound revealed that our baby had a thickened neck skin, typical with Down’s Syndrome. It could be nothing, but it could be a big deal, too. Initially, I declined the additional testing since I knew I would want to keep my baby regardless of what sort of diagnosis he or she would have. And I have heard far too many “horror stories” of women who have been told to expect severe birth defects only to discover that their children are completely “normal” and healthy.
A month went by, and I couldn’t get the possibility of an abnormality out of my head. If something was wrong, wouldn’t it be better to know and prepare? So I told my doctor I wanted the Harmony test.
Waiting was the worst. I kept calling the doctor hoping for news but in the end, just had to be patient and wait for him to call me.
Finally, he did. It was a girl! And I had a 1 in 1,000 chance of having a child with Down’s Syndrome. I was ecstatic! One in 1,000? Awesome odds. Then the hammer dropped. We had a 1 in 10 chance of Trisomy 18, also known as Edward’s Syndrome. An extra 18th chromosome. I had never even heard of it before. The doctor tried to prepare me, telling me the prognosis and symptoms, and advising me to research further so I would fully understand. It was not good. Most babies with T18 die before birth or shortly thereafter. If, by some miracle, she did survive there would likely be heart and lung issues, mental retardation…she would probably never walk or talk or eat on her own.
I remember the time right after that call too clearly. I was sitting in my car in the parking lot of my office and just screaming. I cried and cried and once I pulled myself together enough to speak coherently, I called my husband to let him know. He was upset but thinking clearly. He told me to start letting our family know so we could have as many people praying as possible.
That’s what I did for the rest of day at work. I let the family know and then went on a prayer frenzy. I contacted every church, every website or ministry who would listen and asked them to pray for us. Literally thousands of people were praying for us.
My doctor referred us to a specialist, a maternal fetal medicine doctor who had some experience with Trisomy 18. We had a long, thorough ultrasound which revealed more troubling news, the baby’s kidneys, feet, hands, and heart were all effected. The heart was by far the worst. Multiple defects meant our baby would almost definitely die in utero, and most certainly would die soon after birth. He said, “She might live a minute or an hour, but she is going to die.” I remember him trying to comfort me and me just looking at him.
I was despondent for a while. Then I got myself together. At this point, I just needed some good news. The hands and feet weren’t life-threatening. The kidneys were troubling but her heart defect was lethal. I researched and found a doctor, actually a team who would take a second look and see whether surgery might correct the problems.
Another ultrasound, more news. She had an umbilical hernia. Her hands were ok, not clenched like the first specialist had thought. The heart defect was possibly fixable but they needed another look to be sure.
The next ultrasound showed that surgery was not an option.
At this point we needed a miracle.
I was seeing doctors every week or so and posting updates and prayer requests constantly.
The specialist told me that the heart defect most likely wouldn’t be what killed her, but most babies with T18 have lung issues.
At this point in our journey, I started to get peace. That doesn’t mean I was “ok” with what was happening. I still broke down crying almost daily, asking God “WHY?!??!?!” but knowing that I was doing absolutely everything possible for my little girl put my mind at ease a little more.
I prepared my family as best I could, telling them they needed to travel to Tennessee from Michigan in order to be there when the baby was born since we didn’t know how long we would have.
Time passed, we planned a c-section since the trauma of vaginal birth is especially trying for babies with Trisomy.
I left my job for maternity leave. My co-workers were amazing and prayerful.
Our families came in and we prepared. Hoping for the best but trying to be prepared for the worst.
The day came for the baby’s birth. I had been in contact with several of the hospital workers who would be helping during our stay and they met me before my surgery to explain what would happen. I had a birth plan. I was ready.
She was born.
I couldn’t see her at first but I looked up at Steven and he was crying. “Is she breathing?”
A NICU doctor came to look at her and just shook his head. She WAS breathing but not for long.
They gave her to me, and since I was weak from medicine and unable to hold her on my own, one of the nurses helped me support her. I don’t know who it was, but I am ever grateful for the purple-gloved hands in those pictures.
She was so small, just 4 1/2 pounds. She was struggling, but she was breathing. My little girl. Rebecca Anne Curtis.
I know I cried a bit in the operating room, but mostly I was just entranced and immediately in love with that little girl.
We were sent to recovery. Her color gradually improved as she was able to take in more oxygen. My family was there and got to meet her. Lots of pictures and videos. So much love. Singing and kisses.
It got later and the family left, except for my sisters. We took turns holding her and I sang to her quite a bit. I was too busy loving her to be too sad.
As the night turned to day, her breathing got more labored. A few times she stopped breathing but she always started again. It hurt my heart to see her struggling and I started telling her it was ok to stop fighting. We knew it was time for her to go.
So many kisses, but never enough.
I told her I loved her and she was gone.
Twelve hours, she lived and defied so many odds and expert opinions.
She is my hero, my inspiration, the strongest person I’ve ever known.