I revised my college savings budget sheet, added three weddings at the suggestion of a friend. Sure, it’s old-fashioned, but why not save a little something just in case? I researched vaccines all over again, digging into anything published since my last daughter's birth. I did hypnobirthing, hired a doula and wrangled with a birth preference sheet that both communicated my wishes and welcomed the doctor to advise and assist me. I chose hospital birth for a reason, I told the soft-spoken, petite OB who teased me in gentle, low tones when I worried my belly was too small. By the time she wanted to induce me for hypertension, I trusted her completely and agreed to induce at 38 weeks.
My husband and I fussed over snacks for the hospital, knowing how long induction can take. We brought candles, music, reading materials, blankets and essential oils. I ordered two robes, remembering acutely how the joy of birth can be accompanied by blood,sweat and tears. We dropped Shakespeare the border collie off to Cascade Pet Camp, where once again he would end up working the front desk and becoming best friends with the staff, showing no signs of the aggression he displays around us. Once again, we promised to return soon for more dog training. But life keeps throwing us curveballs.
Working on my health and fertility and making sure I had a negative Western blot for Lyme (since newer studies show it can be passed congenitally) before I conceived G took nearly two years. It was hard treatment because of how long my acute Lyme went untreated. The hardest part was Herxing, which is basically like a terrible flu that means you’re getting better. Carrying G was my best pregnancy yet. Her birth was complicated in some ways but magical and I am grateful I followed my gut and chose hospital care this time. Home birth is for the low-risk candidate, and I think for a long time I was trying to fit a square peg in a round hole. Even now, I’m a week postpartum with G and my blood pressure isn’t behaving at all. But since I have a real OB, I can get medication easily. It’s so much better to have the right fit for care. The midwives I have used are amazing, by the way, and they also referred me to both high-risk OBs and the hospital when things became high-risk. It was always me stubbornly trying to do everything the hard way.
This birth, I tried not to be so stubborn. I still had an unmedicated labor, but once again when back labor struck I was reminded how very much I’d beg for an epidural like anyone else if that had gone on too long. I accepted a sleep aid so I could nap during the second night of induction- pre- labor. I complained when things hurt or were uncomfortable, like sweating though my clothes three times the night after I had G. God bless the night nurse, who gruffly tucked me in with warm blankets and dry Hospital gowns as many times as I needed. G’s birth was healing to me, after the last few years of dealing with so many doctors for my own health- some great, some awful. The best thing my OB said to me was about my birth preference sheet. She could see how nervous I was and she assured me that there was “nothing crazy on there.” After being misdiagnosed with anxiety until my labs finally tanked from untreated celiac, acute Lyme and mold illness, being told I’m not being crazy by a doctor is like a love language to me. It’s equivalent to ten years of therapy for medical trauma. My OB is a Yale graduate in a a cream-colored Gilmore Girls sweater under her lab coat. The delivering OB wore a sweater in emerald green. Dan said if she had dogs they’d be elegant greyhounds. Classy, gentle women doctors are my new heroes.
Four days after G is born we are at the children’s hospital, and the doctor runs our sample to the mailbox, carrying a hot pink Coach medical bag wedged in her armpit. She jogs everywhere that Tuesday, as Dan pushes me behind in a wheelchair, me and baby G. I have no energy to cover up while breastfeeding; shoving my nipple into her mouth everytime we take a ride to the next destination- the two hour appointment with the neurologist, cardiac and physical therapy appointments, and two blood draws and a heel stick. They forget a crucial lab the first stick, prompting my ever-cool-under-pressure husband to drop a few F-bombs at the staff as G screams and they miss the tiny vein again and again. The fresh-faced nursing duo with the needles handles it exactly how a labor and delivery nurse does when something besides blood comes out during labor. They don’t blink an eye, coo and say no apology needed. This is all part of it, their four brown eyes say over the droll blue masks, not quite cornflower but not periwinkle either. A cold blue, like the shadow the corner of a roof makes on snow. A cool spot, you could fall into and never stop falling.
The doctor runs everywhere, herding us like children and rightfully so. We are grateful to be led through this by her determination; we are shell-shocked and exhausted. Before 2018, there was no cure for spinal muscular atrophy. Where a gene should be, there is nothing. Space, zero, nada, zilch. But now, there is a one-time life saving gene therapy treatment. The exact type of therapy I have been so skeptical about when it comes to new vaccines. I had even researched this treatment, Zolgensma, when I wrote my last blog. I said to my husband, now here’s a good use for this technology- babies who had no chance at life are now no longer dying from a couple genetic diseases. Gene therapy has been studied in this exact context since the early 2000s. Editing everyone’s genes to better handle regular illnesses like the flu (this is really in the works btw) doesn’t make as much sense to me without more research. But now, my baby is sick and the best way to give her a chance at survival and a normal life is to edit what God wove in my womb. In my mind I picture the devil making off into the underworld cavern with G’s missing gene glowing in his dark, cruel hands.
Now we are praying for a miracle— could it be the samples were mixed up? We had just assured everyone that she was perfect, all was well. We ask for prayer intercession against this nightmare, nothing else matters anymore besides if G can stay here with us. My six-year-old does skin to skin with G, changes every diaper she’s awake to help with. My three-year-old introduces us to the baby repeatedly. “Hey little baby. I’m C. This is daddy, A, and this is mommy! And this is my puppy. Is SO nice to meet you!”
Now our friends far and wide are praying. Some ask how I am, text and message. Some say thinking of you, others ask how are you, what can we do. Some people make me wince- not understanding how serious the treatment is, how it’s not a choice. I’m no longer surprised when thoughtless comments fall from some mouths, utterances like newly rotted apples thudding on the ground between us. Everything I have already been through has prepared me for this. I need no one’s approval. This orchard has quiet rows my husband and I take turns crying behind. His crying shift is twilight, mine is dawn. When my father counters our instructions to quarantine with there’s -germs-everywhere theories I hand the phone off to my husband and scream in the shower, once. The kids scream too. Once. We all seem to feel a little better, after the screaming.
The doctor is running because all her experience and training for over twenty years tells her every single second counts for G. Newborn G looks perfect, full lips, pinky skin, long hands and feet like her daddy just waiting to grow into. Tall like her sisters. She has a full head of light brown hair with golden eyelashes and brows. Inside that perfect body, nerve motor cells could be dying that G needs to be able to breathe, swallow, and move. With Zolgensma, she could have a normal chance at life. Without it, respiratory failure causes infant death before the age of two. Before 2018, we are told, hospice might be at your house as soon as you came home from the birth center.
I can’t do anything for G from my natural medicine cabinet. I can use a few therapies that are safe for newborns when she herxes from the treatment, and that’s exactly what will happen and why it is dangerous. She will have her immune system completely repressed and given a virus with the gene she is missing encoded inside. She’ll have a massive viral die off, and will be given steroids to mitigate organ failure. We will quarantine for at least a month after. All of this is risky. I have a searing hot pit in my stomach and a sharp lump in my throat. I take four showers in one day because the only way I can stand talking to God is with scalding hot water pouring down directly on top of my head. But, at least we're speaking. At least there is a doctor with a reason to run.
*written on my iPhone