Earlier this year, we got a big surprise: ready or not, baby #3 was on the way! This brought a lot of new things to think through: how were going to fit 3 car seats, let alone the gear necessary for 3 kids, in our car? Where was baby going to sleep? How would Sienna adjust to being a big sister? What would life be like with two kids under the age of 2?
One thing we never thought about was, “What if our baby has something wrong?”
Last Friday, Stephanie was anticipating our routine anatomy ultrasound, looking forward to finding out whether we’re expecting a girl or a boy. She had been feeling a little anxiety about the scan, so a few close friends were praying, but after having our two beautiful, healthy girls, we anticipated only good news. Dan had to work, so his mom was able to go and help keep Sienna entertained and get first dibs on knowing the gender.
Things started out normal enough. But after a few minutes, the ultrasound tech grew silent and serious. “I’m going to be quiet now, and just make some measurements. It’s the way I do things,” she said. But after seemingly going over the same measurements again and again, she abruptly announced that she would be back in a bit. Several minutes passed, with Stephanie feeling more and more anxious and certain something wasn’t right.
Eventually, she returned with the radiologist, who took a few more measurements and calmly told us that they were seeing some very concerning things, including a club foot, abdominal abnormalities, and the baby was measuring small. Stephanie’s OBGYN didn’t add any details on the phone, but let us know we would need to see a high-risk OBGYN and would receive a more in-depth ultrasound. “I’m just as shocked as you are,” she said.
Based on the limited information we had, we decided to start doing some research to prepare ourselves for the worst, or at least for the range of possibilities. One real possibility seemed to be Trisomy 18 or Trisomy 13, very serious conditions where the baby’s body contains an extra copy of a chromosome. (Trisomy 21, or Down’s Syndrome, is the most common trisomy.) Stephanie read a lot of blogs and articles and wrote down some questions. Unfortunately, we weren’t able to get in to Legal Maternal and Fetal Medicine until today. It has been such a long, long week. We grieved, we worried, we spent sleepless nights, we wondered what in the world to pray for.
Our appointment today started out with our ultrasound. We were really grateful for the tech, who was kind and kept us updated with her progress: “I’m measuring the arm, I’m looking at the brain…” Her calm manner helped Stephanie to relax. But as we watched, we could tell that things just weren’t right. This little one didn’t move like our previous babies did, and the head shape didn’t look like Evelynn’s or Sienna’s did during their ultrasounds. We also thought we saw some weird things.
After half an hour, she consulted with the perinatologist, who then came to talk with us. The doctor began walking us through what she was seeing. There was so much to say…. from the bottom of this little one’s feet to the top of their head, so, so much was wrong.
Baby does indeed have restricted growth and club feet, as well as an omphalocele (some of the baby’s bowels are outside the body), an abnormal head shape, heart defects, brain defects, scoliosis of the spine, facial abnormalities, and a cleft palate. She also didn’t detect that the baby is moving its legs and feet normally. There is more that was mentioned, but we will have to wait for the final ultrasound report to remember it all. It was a lot to take in. What we do know is that these combined things give baby an extremely poor prognosis.
We had so hoped that we could at least tell the gender and give this baby a name, but they couldn’t determine that. We will have to wait for the results of our amniocentesis to get a final verdict of the gender.
Her feeling was that yes, this was either most likely Trisomy 18 or Trisomy 13, though she admitted there can be other conditions that would cause defects like this so we couldn’t be sure 100% without the amnio results.
We were able to share with her right away that abortion is not an option for us. Our desire is to honor the gift of this baby’s life, and allow God to take him or her home when He deems right. After that, we met with a genetic counselor, and it was really encouraging to find out that Legacy has a wonderful perinatal hospice program. They work often enough with families facing terminal diagnoses like ours, and have an experienced coordinator who can help us with everything from forming a birth plan to planning for special memory keepsakes.
The counselor told us that for babies with these kind of dire issues, they plan on the 90-90-90 guideline: generally, 90% of babies die in utero; of those born alive, 90% die in the first few days; and of those that survive, 90% die by their first birthday.
No one expects to be planning their child’s birth and death at the same time, but that is where we find ourselves.
Our final meeting today was with the doctor who will be overseeing the rest of Stephanie’s care during the pregnancy. She was kind and supportive and kept using the phrase “your baby” which really helped us feel that she will respect and honor our wishes. Some of the first words out of her mouth were, “I’m so sorry you have to go through this.”
There will be some special things to watch out for, since Stephanie has some extra amniotic fluid due to the baby not being able to swallow and process the fluid normally. This happens often in cases like this. They will be watching that to make sure the fluid doesn’t become too built up or interfere with her lung function.
Next week we will go in for the amniocentesis, and to meet with the palliative care coordinator. We should have some preliminary results from the test after a couple of days.
There is so much unknown ahead. To be honest, right now our hearts are feeling pretty numb. Today’s news wasn’t truly a shock after what we’ve read… but it was a sad reality that some of our worst fears have some true. It seems this baby will be going on to eternity very soon. It is hard to know how to let ourselves get attached, how to parent a child who has such a short time to live, how to think and feel and pray.
We know grief and loss is a process…. and so much of this journey will be unpredictable. Stephanie read this quote from C. S. Lewis’s A Grief Observed:
I thought I could describe a state; make a map of sorrow. Sorrow, however, turns out to be not a state but a process. It needs not a map but a history, and if I don’t stop writing that history at some quite arbitrary point, there’s no reason why I should ever stop. There is something new to be chronicled every day. Grief is like a long valley, a winding valley where any bend may reveal a totally new landscape. As I’ve already noted, not every bend does. Sometimes the surprise is the opposite one; you are presented with exactly the same sort of country you thought you had left behind miles ago. That is when you wonder whether the valley isn’t a circular trench. But it isn’t. There are partial recurrences, but the sequence doesn’t repeat.
We can’t thank everyone enough for their support, prayers, kind words, and gifts. They are our lifeline right now.
Some things we would love prayer for:
- Sleep. It has been difficult for both of us to rest lately.
- Wisdom for helping Evelynn process. She was so, so looking forward to meeting this baby and while we have kept things very general, she knows the gravity of the situation.
- Peace for our hearts for whatever is ahead. We are at peace with God taking this child before birth, but we know that this labor and delivery will have its own challenges and griefs. We are scared.
This feels like uncharted territory. But we trust that God will “make a way in the wilderness and rivers in the desert” (Isaiah 43:19). He has proved faithful in every challenge we’ve met over the years and we know this won’t be an exception.
Dan and Stephanie