Eiche fam

It seems more and more common nowadays to hear about children being diagnosed with conditions that used to be much rarer. But I want to talk about something that is still legitimately rare: when a child is diagnosed with a life-threatening condition.

There are, of course, varying degrees of what classifies as “life-threatening” today. Modern medicine has improved much, even over the course of the six years since Namine was born. But Namine has such an incredibly rare combination of birth defects that doctors predicted that she would not survive.

Of course I can’t tell you, with any great certainty, all you might expect. Birth defects vary between children, and even in the respective support groups we belong to, Namine remains unique. But I can share our experiences, and hope that you might take something from them.

Depend on the doctors’ help

What does remain the same, however, is the hospital. The doctors. If your child is diagnosed with a life-threatening condition, you need the hospital’s involvement. You need the doctors’ help. Pure and simple, without it, your child will likely not survive. I know for a fact that Namine would not have.

I am a Christian. I believe in a loving God. I also believe that this loving God, whom I worship and to whom I pray, let my daughter be afflicted with compounding birth defects. In case you’re wondering, to me that’s the opposite of a miracle. That’s like if Jesus visited Lazarus and struck him dead for no reason at all.

But I also believe in a God that works miracles. People look at Namine and say “it’s a miracle that she’s survived!” And it’s true, it is a miracle, but not one without human involvement. I believe that God has worked through my daughter’s doctors in order to stabilize her.

Do not believe everything doctors say

You might think that I’m contradicting myself, but hear me out. Doctors — and modern medicine in general — are a great help, a blessing from God, and a miracle, even if they don’t know it.

Doctors often believe they have all the answers. At least, they would have you believe they do. But they don’t, and knowing that is crucial.

When Namine was in utero, Jessica and I attended visit after visit at the hospital. Scan after scan, week after week, they kept finding more things going wrong in Namine’s development. Her legs weren’t growing. She had club feet. Her hips were dislocated. Her jaw was regressed. Her heart wasn’t developing correctly. She had worsening scoliosis. On and on and on, the bad news kept piling up and we were met with despair.

Then came assurance from the doctors. But this was not assurance of a positive note, but of the opposite — she was going to die. This was not “we, the doctors, believe she might die.” This was absolute, unwavering certainty: if we followed through with the delivery, she simply would not survive.

Several times it was not merely suggested to us, but encouraged: abort. Abort. Abort. Spare her the lifetime, however short, of pain and misery. Even if she did survive, she would be in constant agony. Spare her all of that. Terminate the pregnancy. It would be a mercy, nothing more.

Jessica and I refused. Whatever life we could give her, however short it might be, we would not kill her. We would love her for as long as God would let us have her.

The end of hope

Namine did not die. Whatever awful fate her doctors had predicted, it did not come to pass. Whatever miserable existence she was expected to have, she has surpassed it.

Our story is but one midst a sea of stories. Some do end in tragedy, but not all. However you look at what abortion is — even if you do not term it murder — it is still the end of hope for a child.

A former coworker once said to me, upon hearing of Namine’s birth defects, “It would have been better to let her die.”

At the time, I felt a rage I cannot articulate. But despite his tactless words, it is unfortunately the opinion of many — including doctors at our own hospital. So, in a strange way, I am thankful that he was heedless in shooting off his mouth. It has given me the uncomfortable opportunity to confront this unfortunate viewpoint.

Namine is severely disadvantaged, that much is certain. She has needed surgery more times than we can count — I’m serious, we really have lost track of the number — three of them alone on her heart. There are difficulties beyond measure, were we to measure them. But we don’t, because while they are there, they do not define us.

Being Pro-choice

When I started writing this post, in my mind it was about reaching out to other parents whose children have life-threatening diseases. But as is the case with many of my posts, it kind of took on a life of its own. I think, looking back, it’s a larger issue. It’s not about feeling hopeful. Jessica and I can tell you all about so many times when we felt such despair, with no end in sight. But it is about having hope, and treasuring each moment.

You don’t know when this moment is your last moment. For so long we were so afraid for Namine’s life, and the experience taught us to cherish the time we have.

“Pro-choice” is synonymous with abortion. In the vernacular, it’s about the woman’s choice to choose — and the unspoken last part of that phrase being to abort her child. Doctors encouraged us to choose, too. They said it would be for the best — now, I wonder whose best that would be. They said it would be easy. (This is true, I have no doubt. Namine’s medical fragility has not made for an easy life, for her or for us. But a difficult life is not one of less value!)

We were encouraged to choose, yes. And we chose: we chose the difficult road, the one not recommended, and it is one we love every day.