Things fall apart

I follow a wide range of people on Twitter – special needs parents and experts, individual programmers, as well as companies. I also follow a few joke accounts. A couple days ago, a tweet by @soveryawkward struck me to my core.

I wouldn’t exactly classify @soveryawkward as a joke account per se, but it’s still primarily for the sake of humor. But a couple days ago, a tweet of theirs hit me right in the heart.

That awkward moment when you realize that sometimes good things fall apart so better things can fall together.

For expecting parents-to-be, nothing could qualify as “good things falling apart” more than discovering that your unborn child will have a birth defect. (That was the first week. Every single week – this is no exaggeration – we found out something else was wrong.) To say it was heartbreaking is paltry and insignificant; there are no words to describe the emotional agony, the despair, the unrelenting wave after wave of horrible news. Before Namine was born, we were promised that she would most likely die during childbirth; if she survived, she could be blind, deaf, mentally handicapped; the amount of surgery she would require in order to live would assure that she would detest physical contact – she would not like hugs or kisses, and holding her would be out of the question before long. All this led certain doctors to suggest that “abortion is an option” – but not for us, never for us. We were told that we could deny her medical treatment once she was born, and “see how she fared.” (I would like someone to explain to me how that is any different from murder.)

In short, nearly every hope any parent could have concerning their child – all were dashed to pieces before Namine was born. Yes, I would call that “things falling apart.”

Namine was born with several conditions. The most life-threatening is called double-inlet left ventricle heart defect. At its most basic description, the bottom left and right chambers of her heart are flipped (the left is on the right, and vice-versa) and the central muscle wall, which separates the two chambers, is missing. The result of this is simple: the “red” blood (oxygenated, to be pumped out to the body) and the “blue” blood (devoid of oxygen, to be pumped to the lungs where it is filled with oxygen) mix. This results in both red blood going to the lungs, where its oxygen cannot be used, and blue blood going to the body, where it will do no good; this, in turn, lowers oxygen saturation percentage. The lower the percentage, the more likely it is that the patient will suffer brain damage from oxygen deprivation.

In the womb, before her heart defect was discovered, the first birth defect Namine was diagnosed with was caudal regression. This means that her tailbone was either missing or only partially formed. (Namine’s is partially formed.) This impacts the development of her pelvis, legs, and feet. And impact it did: Namine’s femurs (thigh bones) are proportionally only a quarter the size of a normal child’s, and moon shaped; she has bowed fibula and tibia (the two bones are between the knee and foot); and she was born with clubbed feet.

Namine was born with what is known as Pierre Robin sequence: a regressed jaw and cleft palate. (The cleft was not visible on the outside, but rather formed a “U” shape inside where the roof of her mouth would have been.)

There were further complications, such as scoliosis, inflexible knees, and more, but they are the result of the three major existing birth defects. Namine has been categorized by doctors as having “femoral facial syndrome,” but all that means is that something went wrong with her femurs (really, legs) and face. None of the three are 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 had significant difficulty breathing, and she 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 that 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 also found out from cardiology much later 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 have needed surgery right away; but Namine’s heart, even born four weeks premature, was not under as much stress because it had less body to pump blood to. The 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.

And still she lives, full of life and love. She has required – and still does require – much surgery. (She still needs a third heart surgery, the time for which is still unknown.) The road she’s been on has been far from easy, but after four years – years of surgery, of equipment (like the g-tube and the trach, the vent and suction machine, the feeding pump, and more), of training (for us) – Namine is healthier and stronger than ever.

And of hugs and kisses? To suggest that she doesn’t like them is more than laughable; it is downright ludicrous. We could not have asked for a more loving, emotive, expressive, and affectionate child. (I wouldn’t hesitate for a moment to call her “lovey-dovey.”)

I love giving Namine a bath. It’s our father-daughter time during the week, just her and me. Even though I’m gone all day, Monday through Friday, I’m so glad that I can spend some time, one-on-one, with her every night. It’s our routine (which adds a little stability to our hectic, all too often doctor-visiting life, which is also important), but it’s not routine. It’s work (washing her up, getting her ready for bed), but it’s also play (splashing, laughing – and she takes her washcloth and bathes her Little People).

One night after Namine’s bath, as I was drying her off, she was shivering slightly, and I was doing my best to hurry so she could warm up. She said to me, “Haha, I’m cold.” (Her name for me isn’t Papa, because when she started to learn to talk, she couldn’t make hard consonants. It’s always been her name for me, and so I will always be her Haha.)

“I know, sweetie. I’m drying you off as fast as I can so we can get your pajamas on, so you can warm up.”

“Thank you for making me feel better, Haha. I love you.”

Did things fall apart, four years ago? Maybe. But maybe they only seemed to fall apart – to our shortsighted eyes. To our limited understanding, God seemed to be shortchanging us, depriving us of something. But instead He was blessing us, giving us a child we hardly deserve, a daughter we can never love enough. I believe in a loving God, a God who leads us down a hard road because He knows us better than we know ourselves. I believe in a God who guides us into what we don’t understand, in order to bring us out and that much closer to Him.

5 responses

  1. Crying here!!! So beautiful. Words like that make you know it’s all worth it.

  2. Beautiful. You two are lucky to have each other!!!

  3. theblondeview Avatar

    Medical Science doesn’t always know what God has planned for precious babes like yours and like mine! Trust. Believe. These children are Miraculous, by design!

  4. I love, love, love this beautiful glimpse into your heart and life! It’s also so refreshing and appropriately timely when so many children with disabilities are being murdered, both legally and not. This post will give many parents hope, I am certain,

  5. Thank you for sharing this lovely story. You are blessed indeed.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.