Parents: Kelly and Sean Edwards
Hometown: Levittown, Pennsylvania
Carried to term, lived 37wks 5 days
Molly Anastasia’s Story
After more than a year and a half of trying to get pregnant on our own, we got our first positive pregnancy test on Feb. 23rd, 2013. Despite our overwhelming excitement, it was still too hard to believe. We told family quickly, but still had trouble letting reality sink in.
Weekly appointments for the entire first trimester at RMA of Philadelphia showed a pregnancy progressing normally without any red flags. As the end of the first trimester approached, we finally began to relax, thinking we were almost out of the woods. I went in for the routine first trimester prenatal screening ultrasound and blood work on April 30th, 2013. We then made it “Facebook Official” and began telling our friends, colleagues and students.
The following week we received a call from the OBGYN asking us to make an appointment for genetic counseling at the hospital. Based on our ages, 28 and 29, we were told there was most likely no reason to worry. On May 13th, 2013, we went in for genetic counseling and were told that against the odds, there was a more than 1 in 5 chance that our child would have Trisomy 13 or 18, chromosomal abnormalities considered fatal in most cases. Rather than getting an amniocentesis, which carries a small chance of miscarriage, we opted for a newer, non-invasive blood test known by the name Panorama. This test would test my blood and look for any abnormalities present, assuming they were coming from the baby’s blood mixing with mine. If there was even the smallest chance the baby did not have Trisomy 13 or 18, we were not willing to risk a miscarriage.
We waited about five days after the genetic counseling appointment to tell close friends and family. Because of the abundance of information surrounding the possible chromosomal abnormalities, the statistics, the blood test we’d chosen to confirm the diagnosis, etc., we constructed an email containing every bit of info. we had and then called our parents to warn them about the information coming. After we’d shared the information with them, given them time to try and process it, and then spoke to them on the phone, we sent private messages to close friends to break the devastating news.
We were told that the results of the Panorama test would take just over a week to come in. I made the difficult decision of backing out of an overnight field trip with my students, knowing full well I could not receive that kind of information more than two hours away from home. On May 23rd, 2013 the Panorama test results were in. Sean received the call at work, writing down on a small scrap of paper that our baby girl had a 99% chance of having Trisomy 18, saddling us with the cruel irony that the disorder is also known as Edwards Syndrome. He was waiting for me on the couch when I got home from work with the news. Almost all cases of Trisomy 18 occur as a result of a random cell division error at conception, leaving us completely powerless to change the outcome.
We both agreed that we would never judge anyone who chose differently from us, but it was never a question in our minds of whether or not to move forward with the pregnancy. We decided from the beginning that we’d give Molly the best chance possible, letting nature take its course while remaining as hopeful as possible.
The following months were full of forced smiles and thank yous to unknowing strangers with well wishes and innocent questions, bi-weekly doctor’s appointments between the OBGYN and hospital, and the constant struggle to remain hopeful against the odds. Trisomy 18 occurs in 1 in 6,500 pregnancies, but only 1 in 10 live past their first birthdays. The odds that at any given doctor’s appointment there would no longer be a heartbeat was a constant fear.
On July 5th, 2013 we had a fetal heart study done. We’d done our research and were aware of the common symptoms of Trisomy 18. It was not a surprise, but we again faced another reality check when we were told that not only was our little girl several weeks behind in terms of growth, but her little heart would most likely not be strong enough to get blood to her lungs if she did make it to her due date.
We fought feelings of anger, jealousy, and denial and surrendered to our fate. We had to sit down and face the truth, spelling out our wishes for the possible outcomes. While delivering stillborn was more likely, if we did get to meet our little one it would be for an undetermined amount of minutes, hours, days, or possibly weeks. We did not want to be selfish, making sure our top priority was always that she not suffer.
After much discussion, in August we decided to use the Mother’s Day gift Sean had given me just weeks before we’d gotten the Trisomy 18 diagnosis, a 3D/4D ultrasound. We decided it may very well be the last chance we got to “see” our Molly alive. The experience was difficult, but we had absolutely no regrets and left with a 30 minute video of her and still photographs to cherish forever.
As another school year began in Sept. 2013, we were both hopeful that she’d make it to November, giving her the best chance possible. We were also all too aware that the end, which would bring heartache no matter the outcome, was near. Hospital visits tapered off and by October the routine, final month weekly appointments soon began. We knew she was still small and were unsure if she was still in the breech position. The doctor ordered a final ultrasound for Oct. 10th to confirm that she had flipped to being head down. We got our first estimate of her actual size 2lbs 11oz. She was more than six weeks behind now.
Determined to continue living life, we celebrated Sean’s 30th birthday with family on Saturday Oct. 12th. The following Thursday, October 17th, we had another check up. I’d felt very little movement that week, not an entirely odd occurrence I’d come to find, but still had a feeling upon waking up that morning that this could be the day. Sean was at work, trying to save up any time off until after Molly was born, so a close friend offered to go along with me. After just a minute or two of struggling to find a heartbeat with the fetal doppler, the doctor left to see if the ultrasound technician had a minute to check me. He did not want to send me into a panic, but wanted a definitive answer quickly. Within just a few minutes, we were taken to the ultrasound room and the ultrasound tech simply whispered “I’m so sorry” as her own eyes welled up with tears and the flat line on the ultrasound machine where Molly’s quick heartbeat had been just one week before was seared into my memory.
We left the office and called Sean, breaking the impossible news to him. We drove to the hospital where he was already waiting and I was admitted to labor and delivery by about 12:30pm. Family soon arrived and I was hooked up to a monitor. My body had already begun having mild contractions. Within about two hours they broke my water to try and speed the process up. At 6:30, contractions had slowed without the pressure of the excess amniotic fluid I’d been carrying to a point that they were able to give me Misoprostol to again try and speed up my labor. Contractions picked up again over the next several hours. We passed the time watching television and visiting with immediate family. By 11:15pm, contractions were again getting stronger, but I was only 4-5 centimeters dilated. By 11:45, I knew it was time. The clock struck midnight and Oct. 18th began, another eerie reminder of the number that had sealed Molly’s fate so many months before. Ten minutes and a few pushes later, Molly Anastasia Edwards, at just 2lb 7oz and 16 inches long, silently entered the world.
We spent the next twelve hours saying goodbye to our first born child, having her photographed by a generous organization set up for situations just like this called Now I Lay Me Down to Sleep, filling out paperwork for a death certificate, and making final arrangements for her. By 3pm on her birthday we were back home in our living room full of memories that will change our lives forever. The outpouring of love and support from family and friends has been incredibly genuine and we know, deep down, that the passing of time will bring peace. We are incredibly thankful that we had the knowledge of her condition early enough to say our goodbyes as best we could. But, the path that this experience has put us on will forever change us and little Miss Molly Anastasia will forever be in our hearts.