Sometimes The Miracle Isn't What You Expect It To Be

Sunday, June 12, 2016

Poor Prenatal Diagnosis: Sometimes the Miracle Isn't What You Expect It To Be

One of the most difficult parts of carrying a baby to term with a lethal birth defect, is listening to stories people tell regarding "miracle" babies.

When you learn of your child's life limiting condition many will share information regarding a baby they knew who was supposed to have anomalies, but came out perfectly fine. Or, a baby who had significant problems at birth, but overcame them.

Friends will often say, "you just need to pray".


"God will take care of it all, if you just pray hard enough."

Some refuse to believe your doctor's assertion that the severity of your child's defects are life-limiting. They insist your baby will prove the medical establishment wrong.

Some call the babies in their stories miracles, and imply that God chose to save them because of the faith of their families.

The problem is, we don't get to define the nature of a miracle. And some families don't get rewarded with healthy babies because they pray harder than other families.

Sometimes what we think of as miraculous is a doctor who's willing to take a chance, and medical science {which is, of course, God-given} pushed to its limits. Sometimes what we think of as a miracle is a mistake on a lab test, the poor readings of an inexperienced ultrasound tech, or a misunderstanding about fetal development.

And sometimes it doesn't matter how hard, or how fervently you pray. Your baby dies anyway.

As I said before -- we don't get to define the nature of a miracle. And if we try, we may miss out on a real one.

Because sometimes, miraculous is a baby who only lives for a few hours.

Think about this: each strand of DNA in every infant ever born tells the story of a child who will never be replicated in time or space. There are entire universes of information in the smallest atom of a baby's body. 

How could anyone see any baby as less than miraculous?

While a doctor may be wrong, God never is. He's chosen each and every baby for each specific family. He has created each of us a miracle.

God created my daughter just as He created each and every other child ever born. And while I will never understand it this side of heaven, His plan included this fragile girl.

In addition to the obvious problem with implying that a child being carried with a fetal anomaly is somehow broken, sharing these stories can be unwelcome.

Parents don't always want to hear about your miracle baby whose situation really doesn't apply. They want you to love them through this.

When strangers told me I should go to Mexico, because I could receive medical treatments there which weren't available in the US, it wasn't helpful. They obviously weren't listening when I told them about my daughter. They were visualizing the baby they wanted her to be instead of the baby who she was.

We were told our daughter would most likely die when she was born. While we took measures to assure that she was properly assessed, aggressively resuscitated after birth, and given any intervention a typical child would have been given, we understood those measures would most likely be unsuccessful. We saw our daughter for what she was, a child affected by a severe life-limiting birth defect. We loved her, whatever her form.

The family who is faced with a poor pregnancy diagnosis often has much more information than they're sharing with the world. They've had multiple sessions with genetic counselors, perinatologists, and pediatric specialists who understand more about their child's condition than the average Facebook commenter ever will. Trust me, they've researched every instance of a survivor with their child's condition. They are fighting for their child's life, and will go to any lengths to save them. Because of this, your viewpoint isn't always as informed as you may believe.

Others would claim miracles for us and visualize our daughter as a typical child. But this wasn't our daughter they were seeing. It was an imaginary child they'd decided to see instead of seeing her.

Parents who continue a pregnancy, after a poor prenatal diagnosis has been made, need support for the situation they are in in the moment -- they need you to love their special needs baby unconditionally -- and they need you to love their baby now. They need you to trust their judgement.

Parents in this situation don't want you to imagine their babies as anything other than what he/she is.

Because these babies are all miracles, no matter the length of their life.

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