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Our Birth Story: 1 in 4000

Ironically my birth story is not really about birth at all. And that’s exactly what lesson one of motherhood was for me: take your expectations and bury them. Because it’s nothing like you expected (both good and difficult) and so, so much more.

My birth was pretty awesome. Here’s how it went, in short form: 4am wake up on the 11th of January; erratic contractions; laboured at home; walked and bounced like mad; went off to hospital at 11pm that night; took 24 hours to get to 3cm dilated; cried with disappointment; water broke; 0 to 100 real quick; excruciating pain; cried some more; called for anesthesiologist; epidural; wanted to marry anesthesiologist; fully dilated; time to push; pushed her out in 10 minutes; VOILA! We had a baby!

I laboured for a total of 28 hours – here I am with my amazing Doula, Kat, from Cuddles & Co. I would never have managed natural birth without her.
Me, 24 hours in, after having an epidural and feeling MUCH better!

At 8:37am on the 12th of January 2018 Adrienne Zoey Shraga arrived! Best day of our lives! Here is our first photo together. (Yes I am a Kim Kardashian-esque ugly crier).

Daddy’s 1st photo! So proud!

Albeit single handedly the best day of our lives, later that evening it became one of the toughest.

At around 11pm on the day Ady was born, after what was an absolutely perfect day, we received some rather unsettling news. Her pediatrician, a little bewildered herself, informed us that some test results from her cord blood were “a little off.” Actually, a lot off. Huh? Cord blood? What test? Sorry, what result? These were literally my first reactions. Complete bewilderment.

During my pregnancy I had prided myself in being ultra-informed. I’d read the books, done the googling and supposedly expertly prepared myself for the biggest event of my life. My A-Type personality was ready! I’d ticked all the boxes, dotted the i’s, crossed the t’s and even done the kegels. But actually, what I’ve learnt since then is that motherhood cannot really be prepared for.

And yet there I was, on day one, feeling completely overwhelmed and under prepared for what lay ahead. It felt like I’d been hit by a train.

I had absolutely NO idea that at birth, at some hospitals, blood is taken from your baby’s umbilical cord for thyroid function testing. And this test had revealed something irregular in Adrienne’s cord blood.

Adrienne’s TSH levels (Thyroid Stimulating Hormone) were off the chart. Nearly triple what they should be, and she wasn’t even 24 hours old. This could mean a few things but when the words “no thyroid gland” and “birth defect” came out of the Pediatrician’s mouth I immediately felt and was physically ill.

Ady was super dry when she was born – a sign of Congenital Hypothyroidism – but it could also be attributed to the fact that she was born at 40 weeks.

My mind raced with a billion questions. Why is this happening to us? What did I do wrong? Could this be a false positive? Will she be OK? What the fuck does your thyroid gland do anyways?

It turns out, in babies, the Thyroid Gland does quite a lot and it’s kind of a big deal to have it missing.

The day after Ady was born a radiologist confirmed what our Paediatrician had suspected. Adrienne was born without a Thyroid Gland and was diagnosed with Congenital Hypothyroidism. If not picked up in infancy the consequences are severe and can result in mental and physical disability. That last sentence is all you need to send a new mom, filled to the brim with raging birth hormones, over the edge.

I was devastated.

Chilling with Dad on day 2 of life. We asked for no visitors later that day as we were feeling quite overwhelmed.

I felt as if I failed to bring her into the world safely and healthily. I felt like I had failed this one task I was given. The most important task I’ve ever had to complete. And I hadn’t gotten it right.

BUT, and this is a big but, we are incredibly blessed. CH (Congenital Hypothyroidism), albeit very serious, is very easy to treat. The majority of children who are diagnosed early go on to live normal, healthy lives and reach their full potential. Because Ady has DOLOLO Thyroid Gland her body doesn’t create any Thyroxine which is essential for mental and physical development in babies.

The treatment is so ironically simple for something so incredibly important. Every day we give her a tiny little pill (we crush it up and just shove it in her mouth) and that’s that. End of story. The biggest oxymoron of my life.

Ady taking her meds with some leftovers all over her face! Don’t worry, I shoved it back in and made sure she got her full dose.

The hardest part of all of this is the lesson I needed to learn: you can’t control everything.

I had done everything perfectly. I had eaten well. I had exercised. I had taken the folic acid. I’d gone for all the tests and my risk factors were low. I’d read the books. I’d prepped her room. I’d done everything I was told to do. And yet I still had no control over the fact that she would be born without this crucial organ.

I had always believed my baby to be 1 in a million – every mother does. But it turns out our Ady is 1 in 4000 – born with CH.

Our 1 in a million (4000)

So I’m slowly letting go of my self-torture. And trying to see a silver lining. It’s the “what if’s” that drive me crazy. And my anxiety as a new mom is now out of control. I’m working on both of these so that I can be the best mom to Adrienne. (I encourage any new mommies to seek help if you’re having any similar feelings as it’s so normal to experience this when your baby arrives. Read more about Postpartum Depression and Anxiety here. You can also speak to the South African Depression and Anxiety Group.

Maybe part of our purpose in this life is to bring awareness to the fact that thyroid testing is only done at some private hospitals in South Africa. Did you know that this test costs less than R700? That it is a legal requirement in countries like the United States and the UK but it is not part of legislation here? That treatment for CH is cheap and very manageable?

There are children out there, with undiagnosed CH, who are possibly losing an IQ point a week of irreversible brain damage and unfortunately their parents are none the wiser. And this could all be changed with a simple “miracle pill.”

I recently tattooed the chemical composition of Thyroxine (T4) on my arm as a symbol for Adrienne – to remind her how much I love her and a promise that I’ll always be her champion.

So for now, with a pill a day and blood tests every now and so often, we watch our baby grow and thrive into the amazing little human I know her to be. My Ady Baby is such a blessing. And I can’t imagine her not being in our lives. With or without a thyroid gland.

For more information on Congenital Hypothyroidism click here. Ask your Gynaecologist or Paediatrician about thyroid function testing and the Newborn Screening and educate yourself on your hospital or birthing centre’s testing policies. You have a right to know.

In the long run, my goal (even though it may seem impossible) is to change legislation in South Africa and make Thyroid Function Testing a mandatory requirement for all children born at public and private hospitals. If you would like to keep in touch and help, or maybe know how we can tackle this mammoth task, email me here. If you are a CH parent yourself and would like to chat feel free to contact me here.

On a personal note, I would like to thank Adrienne’s amazing, loving, kind and compassionate Pediatrician Dr. Mirjana Lucic whose attention to detail and urgency diagnosed Ady on day 2 of her life. It is because of her, and the policies she and her colleagues put in place at the hospital, that Adrienne will grow to be a normal functioning and healthy little girl. Thank you to my Gynae, Dr. Sarah Jackson, who showed such compassion in those first few days of her life and brought her into this big wide world safely. Thank you’s must also go to the incredible nursing staff at the Netcare Park Lane Hospital who were supportive and caring through the tears, the extra blood draws and scans. Your kindness and professionalism was not unnoticed.

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