What happened when Erica’s diagnosis came in
In a recent post, I talked about Erica, whose fetus had Trisomy 18. This was diagnosed with amniocentesis after she had an abnormal blood screening test. I was glad that Erica had her answer at a time when she could absorb the information, pause, and breathe.
She returned with her husband a week later. They met again with the genetic counselor, then we sat and talked. Trisomy 18 is considered a life-limiting anomaly; that is, almost all babies with Trisomy 18 die before their first birthdays. Those who do survive have major medical problems and disabilities.
Two basic options
When a fetus has a life-limiting abnormality, you have two basic options – to continue the pregnancy or not.
Whatever the OB provider’s personal beliefs are, we must lay all options on the table without judgment. More and more, I am seeing patients continue their pregnancies. Sometimes this is simply because they can’t afford to seek an abortion, but one patient told me, “This is the only time I have to spend with my baby; I am going to treasure every day.”
Still others continue their pregnancies because, deep down, they don’t believe that the diagnosis is correct, or that the problem is real. I have seen a few patients go to a hospital far from home when it was time to deliver, hoping that someone who wasn’t aware of the diagnosis would see something different.
Erica and her baby
Erica elected to continue her pregnancy, and once she accepted what was happening with her baby, she grew up.
I marvel at how often that happens in the face of adversity. People who don’t believe that they are strong enough to face a problem like this find that they are braver than they realized. I arranged a palliative care consultation with one of the neonatologists at our hospital (who also happens to be my sister).
Palliative care is a relatively new subspecialty of newborn medicine. When a fetus has a lethal anomaly or a very poor chance of survival, the palliative care specialist can meet with the patient and her family to talk about what to expect at delivery and the hours and days afterward.
They work to clarify what the patient wants for her baby.
Some parents don’t want their baby to have anything invasive like a breathing tube; others want everything possible done to prolong their child’s life. Planning not only gives you a little more control over the situation, it takes away some of the fear. The palliative care team communicates with the OB provider and the Labor and Delivery unit, so that everyone can work together to support the patient and her family during this painful time.
I now see Erica every month or so for follow up. We are waiting, she and I, for this baby to arrive. She feels him move and has given him a name. When she delivers, everyone in the hospital will be ready to care for her and her son. In my last post, I described hope as shiny and cruel, but it is also tender and patient.
Erica can’t see past this pregnancy right now, but I can. Joy is waiting there, just past the grief. My hope is that she will come back in a year or two with an uneventful pregnancy. I am looking forward to meeting her there.
No one can tell you exactly what to feel or do in this situation. Just don’t forget, there is hope even in the pain. The outcome may not be what you hoped for, but it may be beautiful nonetheless. When you work with your OB provider and pediatric team, you will have a clearer path to navigating your pregnancy with confidence.