From day one, the pregnancy was different. Every normal pregnancy symptom was magnified to an uncomfortable extent. At our 8 week appointment, a routine pap smear came back abnormal. The OB referred us on to Gynecological Oncology – to be screened for cancer.
At 14 weeks we saw a second OBGYN that performed a cervical biopsy and did a routine ultrasound. During this appointment, the sonographer noted a physical deformity on our preborn baby.
We always thought we would choose life, no matter what. We had discussed it in the way you might discuss potentially winning the lottery. “What would we do with our millions?” We never saw this coming. We also never had a reason to put our beliefs into practice until the doctor pulled us into her private office. I had never sat in an OB’s office before. She delivered the news as simply and impersonal as her office walls: white, bare, worn.
“There is an abnormality on your ultrasound, and we need to make a decision quickly,” she said simply, factually, and unemotionally. There was not an opportunity to feel any sort of way. Our state was embroiled in a battle of heartbeats. Abortion was outlawed completely, but the neighboring state allowed abortions up to 20 weeks gestation. She informed us we had six weeks to gather information to find out if our baby was viable.
Abortion was on the table immediately. The ability to quickly provide information so we could make an informed decision became the primary focus of the pregnancy over everything else.
At 16 weeks, we went to an appointment with Maternal Fetal Medicine for our first detailed ultrasound. The doctor came in, his sleeves rolled up and informed us our daughter had a Cystic Hygroma – a fluid filled sack on the back of her head. She had all organs, extremities, functions, and zero markers for any additional diagnoses. However, preborn babies with cystic hygromas are only given a 10% chance of survival as they can be indicative of other issues like gene mutations. The data for cystic hygromas is further skewed as health professionals now offer routine ultrasounds between 8-20 weeks, a time when the CH may resolve. Overall, parents are predominantly choosing to terminate these pregnancies – similar statistically to down syndrome diagnoses.
We asked the doctor for his advice. He said our society considers it a kindness to euthanize family pets, and we should consider it a kindness for our daughter as well.
We called our OB to ask for more infofmation. She was older, wise, mature, and confident. Her original unemotional and factual diagnosis made me feel I could trust her medical advice. I felt heard in her care. After a round of questions with her, termination was again recommended – urgently, to meet abortion deadlines. She ended the call with referrals to a clinic, and programs that would pay for the procedure and the transportation costs. She was not referring us to support groups for fatal fetal diagnosis or perinatal hospice support.
She had been honest in her replies, and in her honesty, she validated the truth I already knew – the truth that a lot of us choose not to think about: babies do not come out whole in abortions. And our 16 week old preborn baby, with a strong heartbeat, and all her fingers and toes, and arms and legs, would be pulled apart as they removed her from my body.
To abort my baby, I must destroy her limb by limb.
But this is what multiple doctors were advising. This is the medical advice they offered when we asked. “Terminate. There is no hope. 10% is not hope to live by,” they concluded.
I wanted more answers. I wanted more information. I wanted to read the studies the doctors read. I wanted to know the statistical outcomes and data points. I wanted to understand this diagnosis inside and out. So I went to the internet and started digging.
It was in the depths of the internet where I found an outdated Baby Center forum titled “Cystic Hygroma Success Stories!!!” Hundreds of Stories. It was there in my darkest hours, when the temptation to be relieved of my physical pregnancy symptoms, to focus on a possible cancer diagnosis, to relieve the stress of an already stressful year,…it was there that we found HOPE.
What Made Us Consider Abortion
It feels embarrassing to admit we pondered abortion as a couple who has been married for 20 years and with 5 of our own children. It’s also not standard practice to go against your doctor’s medical advice. They are the experts. Not a friend, family, nor church member told us to keep our baby, understandably so. Everyone told us they would support our choice, but we shouldered the burden of making that decision alone. What we really wanted was permission to say yes. We were praying to God for answers, on our knees pleading with him for some sort of sign.
What Changed Our Mind
God’s sign came in the first sliver of hope we found: a community of women in a forgotten online forum telling their stories of choosing life through the same diagnosis. When God answers, you know. In finding that forum, we knew he wanted us to have hope for our baby.
That’s why our daughter was given the middle name Hope. We gave her back what was taken from her by the medical community:
Shiloh Hope Welch
Our Outcome
After developing a rare condition called Mirrors Syndrome, we ended up having to deliver Shiloh Hope at 21 weeks gestation. She passed away during labor. My husband held her as she transitioned into the next world. She stayed with us after the birth. The nurses took her hand and foot prints, made impressions in clay, and gave us a beaded bracelet with her name on it. They dressed her in a tiny diaper and wrapped her in a handmade blanket and hat that had been donated for these reasons. A professional photographer came and took photos of us with our baby girl. A social worker came and helped make arrangements with a funeral home. My friends came to our home while I was in the hospital and filled our freezer with meals. Neighbors dropped by hot meals for our children at home.
While we grieved we were wrapped in God’s protective arms by many people that cared. It solidified relationships for us, and amplified others. The experience of losing our daughter would be one of two realizations we would have. The first, being that grief isn’t meant to be experienced alone. When a woman chooses to abort she is robbed of this support. Often she endures the loss alone. She never gets to see or hold the baby. Our daughter’s life was recognized and celebrated, and our grief was validated and embraced.
Secondly, Mirror’s Condition is a rare diagnosis. It is .0025% of the pregnant population and only occurs if your preborn baby has edema or hydrops. 1/3 of mothers with Mirrors end up in the ICU. A case study from our experience was completed and will be listed in medical journals – the same medical journals we read when trying to research Shiloh’s condition. This will help other doctors make quicker and more accurate Mirror’s Syndrome diagnoses. Through choosing life, Shiloh’s passing will ultimately help save other mothers and babies. Through choosing life, we experienced the grace of our community. Through choosing life, we also recognized relationships we needed to move on from.
If you were to ask myself or my husband if we would choose differently knowing Shiloh would die in the end, we would both agree we would still do it again over, and over, and over again for the chance to hold her one more time.
By Jessica Welch
IG: jessicawelchofficial
