Often, when we tell Namine’s story, the response is pity of some kind. Another common response is “why?” Why should Namine have to suffer these things? What did she do to deserve such a life? What did we do to cause her such a beginning? Or is she merely the victim of random happenstance, the living evidence of life’s cruel injustices? I suggest a third alternative: Namine did not just happen to take this shape; but she was made this way. To put it perhaps a different way, she was designed, with such precision and deliberation that this is how she was meant to be.
One life to live
Namine was born with a host of problems. Most likely, if you are reading this, you either know or know of Namine. So this is probably a repeat of what you already know, but let me repeat it anyway. Namine was born with double-inlet left-ventricle heart defect, resulting in the reversal of the upper left and right chambers of her heart, and a lack of muscle wall between the the lower left and right chambers (there were further problems with her arteries, but let’s keep going); caudal regression, resulting in club feet, shortened femurs, bowed femurs, tibias and fibulas, dislocated hips, scoliosis, and a more fragile lower skeletal structure; and Pierre Robin sequence, resulting in a regressed jaw and a partial cleft palate.
She was also born with other genetic anomalies, ultimately leading doctors to assure us that she would never move her legs, would be mentally handicapped and prone to seizures, and more. That is, if she even survived birth and the first few weeks of life, all of which was highly unlikely. We were told that “abortion is an option” – but for us, it never was. We were told that we could deny her medical treatment once she was born, and “see how she fared.” (Personally, I would like someone to explain to me how that is any different from murder.)
You could look at Namine now and not see all that she’s been through. She has a scar on her neck from where the tracheostomy used to be, but it’s rapidly fading. You would never know about how she couldn’t breathe on her own when she was born, about just how stressful taking care of her with the trach was – the frantic trips to the hospital, the infections, the labored breathing and respitory distress – or how relieving it was when she finally got rid of it. There was so much stress, on our part and hers, and pain (emotional for us, emotional and physical for her) involved; but you’d never know it now. It’s been a long, hard road for her to get where she is, but well worth every drop of blood and sweat, well worth every tear to get her where she is. And the road has only just begun.
A reason for everything
The three major problems Namine was born with, as I said before, are the heart defect, caudal regression, and Pierre Robin. None of the three were directly linked, but they all have interacted with each other in ways that can only be described as incredible.
Prior to Namine’s birth, doctors predicted that if she didn’t die during birth or shortly afterward, she would need to be rushed away immediately to undergo heart surgery. As it turned out, she did not need surgery immediately. Do not misunderstand me – Namine could not breathe, and did come close to dying, but it was her airway, not her heart, that needed the immediate attention. The first heart surgery actually occurred two weeks after she was born. Two very hard weeks in the neonatal ICU, after which she was moved to the pediatric ICU, where she lived for roughly the next 7 months before being allowed to come home.
We found out from the ear/nose/throat (ENT) doctors later that it was Namine’s cleft palate that allowed her to breathe the little bit she could. Even with the breathing tube, her jaw, regressed as it was, might have choked her. But another result of the Pierre Robin was a U-shaped partial cleft palate that provided a secondary pathway for air.
While we were in the hospital, we were told that partial cleft palates are rare; they are usually all the way through the hard palate, splitting the lip, gums, and teeth. I have since done quite a bit of reading on Pierre Robin sequence, and according to research, this U-shaped cleft palate is common to Pierre Robin patients. A trait of the very defect itself, it lent Namine an advantage she would not have had without the cleft palate.
We were also told by cardiology that Namine’s heart was not in as much distress as they expected because of her caudal regression. A normal patient with double inlet left ventricle heart defect most likely would need surgery right away; but Namine’s heart, even born premature, was not under as much stress because it had less body to pump blood to. To think that her caudal regression, which we had first thought of as a curse upon her, was in fact a gift, even one that had perhaps saved her life.
Saving a life
My sister and mom go to a fancy shmancy place to get their hair done. (Hey, I’m a guy. You expect me to take something like that seriously? Come on.) Anyway, my sister Lydia met a lady there, also getting her hair done, whose friend was expecting a child. This child had a pretty dark future ahead, according to doctors. It looked like the child had caudal regression – though how severe, no one could say. (Pause for a moment and consider; what are the chances of this meeting? Caudal regression occurs in 1 out of 25,000 live births.) This poor lady could hardly bear the news; she was seriously considering abortion, because doctors assured her that her child’s life would be short and full of misery. Sound familiar?
Lydia had on her phone pictures of Namine; she showed them to the lady, and directed her and her friend to this very website. Ultimately, the lady decided to keep her child, given new hope by Namine. Just imagine – our little girl helped to save a life, and did so just by being herself, her strong and determined self.
When Namine was a tiny little thing and still in the hospital (which actually doesn’t help you narrow down anything – she was hospitalized for the first seven months of her life), our church held a benefit dinner for Namine. It was bigger than anything either Jessica or I could have hoped for. Not only did it bring in money to help us pay for bills that we never would have been able to pay for otherwise, it started a chain reaction of prayer across multiple churches. Even now, people we don’t know still pray for Namine.
“She looks amazing!”
Last weekend in church, Namine was being loud, so I took her into the “mother’s room,” where parents can take loud babies but still listen to the service. There was another parent with a child in there, and Namine – who loves all children – played with him like he was her best friend. I introduced myself and Namine (who waved “hi”), and we were met with the response, “So that’s Namine! We’ve been praying for you! Wow, she looks awesome!”
Like I said at the start of this post, if you didn’t know Namine when she was more medically fragile, you wouldn’t know just how well she’s doing now. But the people that do know can appreciate just how far she’s come.
Statistically, Namine’s surgery success rate is almost unheard of. Namine’s heart surgeon has had nothing but praise for Namine. Both heart surgeries were by-the-book successful; he didn’t expect either of them to go as smoothly as they did. The jaw distractor placement itself went well, and despite how tiny she is, she has very strong bone structure in her face; she was able to get rid of the distractors earlier than expected. Her lower jaw itself is growing nicely along with the rest of her, something her plastic surgeon said might not happen. The cleft palate repair went better than expected as well – it was able to be closed air-tight, another thing we were warned might not happen. Namine got a stoma infection shortly after decannulation, but she has been healthy since, and her O2 stats continue to amaze her doctors. The club foot repair itself was hard, but she has her AFOs now, and is starting to bear her own weight (with a little help). Just last night Namine remained standing for a count of ten, three times in a row.
I started this post with the question, what if Namine’s medical condition isn’t the result of some genetic flaw, but rather, she was deliberately designed this way? What if God meant her to be this way? Certainly she wouldn’t be the same girl who inspires us with her love and strength.
I believe in a loving God, a God who leads us down a hard road because He knows us better than we know ourselves. A God who guides us past what we don’t understand, in order to bring us closer to Him. What do you believe in?