Mom to Rebecca Anne
September 4, 2015 – September 5, 2015
My first pregnancy was textbook, perfect. No morning sickness, no surprises. I actually delivered a beautiful, healthy daughter on my due date.
When I got pregnant again, I expected more of the same. I was so excited I began telling everyone as soon as I found out. A few weeks later, I had a persistent lower backache one day at work. I didn’t think much of it, but when I got home, I discovered that I was spotting. I panicked and called my doctors office, but it was after hours so I wasn’t able to speak to anyone til the next day. I spent that night completely terrified, researching miscarriage online. No one I knew had had a miscarriage, or so I thought. I went to the doctor the next day, still hoping everything was ok. They performed an ultrasound and my worst fears were confirmed.
“It’s not moving, is it?”
“No, sweetie, I’m sorry.”
I spoke to the doctor and we decided that I wouldn’t take anything to help the miscarriage along, or have any surgery. My doctor advised that it could take several days or even several weeks until my body naturally completed the miscarriage. It would be like a heavy period and I would come back in after to make sure I was ok.
I spent that night on the bathroom floor. “Heavy period” was the understatement of the century. Strong cramps, actually contractions and extreme pain. I lost so much blood that I couldn’t lift my head without passing out. Near daylight, I got scared enough to ask my husband to call me an ambulance. I was so weak.
At the hospital they did another ultrasound and determined that everything was gone. I was still extremely weak, and they considered a blood transfusion, but decided against it.
I was discharged and took the week off from work to recover.
Back home, I was still weak and passed out several times. At my follow-up appointment, my doctor prescribed iron pills for anemia. Slowly, I regained my strength. And people started coming out of the woodwork, telling me they’d lost pregnancies, too, even multiple ones. It is so, incredibly common and yet no one talks about it. I have made an effort since my experience to talk about it. I want people to know about my baby, even if I know nothing about him or her. My baby existed, and I am happy to be his or her mother.
The baby I miscarried was due December 27. Almost exactly to the day, we discovered we were pregnant again. A rainbow baby, what a blessing! This time, I didn’t tell anyone for several months. I decided I would wait until the second trimester, when the risk of miscarriage would be much lower.
Around 3 months into the pregnancy, everything was going well. No sickness. I went to the doctor for an ultrasound and he told me that my baby’s neck skin was thicker than normal, typical of babies with Down’s Syndrome. I knew that others had experienced this thickness and gone on to have perfectly “normal” and healthy babies, and I also know I would choose to keep my baby regardless of health issues, so I declined further testing.
A month went by and I couldn’t get the thought of Down’s out of my mind. I needed to know just to put my mind at ease and also to prepare if something really was wrong. I went back to my doctor and requested 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 church family was constantly praying.
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. She was perfect. Dark, curly hair just like her big sister. Beautiful. Even her tiny, twisted feet were perfect.
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.
My greatest sadness is that I will never know what my lost children would have been. All I know is that they were held and loved their entire lives. I regret their existence not a bit. And I look forward to seeing them again some day in Heaven. That hope is what keeps me moving forward. If my pain can propel me into the path to help someone else, I will feel this is all worth something.
Sarah can be reached at firstname.lastname@example.org and