When your baby has a birth defect

After giving birth to a baby with a birth defect, one mom learns that being perfect is a matter of perspective. After all, if there’s one thing parenting will teach you, it’s that you will never again be in complete control of your life. No matter how carefully you plan, no matter how prepared you think you are, life will still find ways to throw you curveballs. Will you stay in the game? Or head straight for the sidelines?

Woman with NewbornNine months ago, I discovered I
was pregnant with my fifth child. Instead of the elation and euphoria I felt with my other four pregnancies, I was overwhelmed with fear.

We have a child with special needs already, and I was terrified that my new baby would have the same genetic disorder — or something else that would make our lives even more unpredictable than
they already are.

CVS testing

We spoke to our geneticist and ultimately decided to schedule a CVS. It was an extremely difficult time. We honestly didn’t know what we would do if we got back results indicating another
chromosomal abnormality. I cried an awful lot during those weeks.

The CVS and our detailed ultrasounds were totally normal. In fact, they were so normal that I was asked to participate in a study of babies with totally normal hearts, as part of the control group.
I really reveled in hearing my baby called totally normal, and I worked it into every conversation for weeks.

Raw Emotions

Just a few days ago, my son was born in a planned homebirth with a midwife. And in the moments after his birth, I saw something on my midwife’s face. “What aren’t you telling me?” I asked her, and
she sighed. She lifted the hat she had placed on my baby to show me that his right ear is malformed. In fact, he has microtia (meaning “small ear”), a congenital deformity of the outer ear. My
son’s is actually called Grade III microtia, and he has no outer ear canal.

We were, of course, concerned. Did this physical anomaly indicate an underlying syndrome? Ears and kidneys are formed at the same time, so would there be kidney problems? Uncertainty clouded those
moments. My overwhelming thought was, This is my fault, because I wasn’t happy to find out I was pregnant.

In just 10 days, my husband and I have learned an enormous amount about microtia, the options for surgical reconstruction, the doctors who have the most experience, the clinics where ear
reconstruction is all they do.

We took our son for a renal ultrasound and learned, to our great relief, that his kidneys are fine.

We took him for a hearing test and learned:

  • Our son’s left (unaffected) ear has normal hearing.
  • That means his speech and language development should be completely normal.
  • On the right side, our son’s inner ear responds normally.
  • That means that in several years, when he can undergo surgical reconstruction and creation of an external ear canal, he should have normal stereo (binaural) hearing.
  • We’ll need to do an imaging study like a CT or an MRI to determine the underlying structure of the ear.
  • There’s no point in doing that before he’s at least one year old, because no one will even discuss surgery until age three.

A healthy perspective

These past ten days have been a whirlwind, to be sure, but they don’t hold a candle to the desperation and sheer terror I felt nearly six years ago, when my third child was born and spent 11 days
in the NICU. Perhaps our experiences with him have given us perspective. Perhaps we have grown as people, as parents.

Whatever it is, it’s made it very easy to focus on several important facts:

  • My new son is adorable.
  • He is healthy.
  • If his ear is his greatest problem in life, he will have an excellent life.

In fact, I would go so far as to say that my baby is perfect, just as he is. Yes, we will ultimately go in for surgery, just as we would get him glasses if he needed them to see. But he is already
perfect, and we are so grateful to have him.

I recognize that as birth defects go, this one is incredibly mild. Certainly, children are born with much more severe problems that can’t be waved away. In fact, I have a son who has such issues,
and I am constantly offended when people try to dismiss those issues as unimportant.

But I am equally offended by those who suggest that my son is somehow “less than” because of his disabilities. He is perfect. Yes, if I could magically un-mutuate his DNA, of course I would. But I
can’t, and he remains as he is. He remains perfect, issues and all.

Is there a point in all of this? Not necessarily, but if there is, it is this: Perfect is a matter of perspective.

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