This time last year, I lay in bed worrying. Worrying all night long. We escaped the city and went to the farm where I could be pregnant and worry in peace by the fire place.
We had skipped the 13 week genetic testing ultrasound and had been so laid back about things that we didn’t get around to getting the anatomical scan done until 22 weeks. I was doing my best to ignore being pregnant since no one wants to let you dig holes when you are pregnant so pregnancy and I aren’t really very good friends.
We thought it would be fun to know the sex of our baby so even though we had talked of skipping the big ultrasound we decided to go. I 100% thought we were having a girl and a girl would be nice for a few good reasons:
1. Rebecca has awesome clothes and it would be fun to use them again, especially the handmade etsy pinafores and such.
2. We live in a tiny 2 bedroom house with no chance of moving so the kids are going to have to share a room eventually and wouldn’t decorating a little girls’ room be fun?
3. Last but certainly most important, really, this was a pressing issue in my mind; No Football Pajamas. Boys clothes are just gross! Football, Baseball, CAMOUFLAGE?! I mean come on! The chances of a child of mine identifying with sports is pretty slim. We were having a good time with this and every once in a while someone would well meaningly say something along the lines of “As long as the baby’s healthy”. Yeah, yeah, we thought, the baby’s just fine and let me insult boys’ clothes as much as I want.
So at 22 weeks pregnant I lay on the ultrasound table a few weeks late for my 20 week ultrasound. Rebecca and Ryan waited in the waiting room and I was wondering why this was taking so long. I was there forever, there was something the tech was trying to see and couldn’t. I knew the baby was breach at this point and figured that must be it. The technician called in my family and told us we were having a little boy and went on to be first of many to say Ryan was so lucky to be having a son (because it’s somehow appropriate to insinuate that men only want sons in front of their daughters?).
I sat in the car, taking solace in knowing we could still use our favourite name, Robin. Then we went home and I cried hormonal tears about football pajamas while sorting out piles of perfect cotton dresses and floral printed sleepers that the new baby wouldn’t wear.
By the time we were at the midwives’ clinic the next week I was over it. I had caught on that little boys wear stripes and grey wool coats and tiny converse running shoes and had made peace with any hang ups about gender we had had. But you see, those 20 week ultrasounds have a purpose, and it’s not actually to check out your baby’s genitals. Our midwife Esther sat there and explained that our baby clearly had clubbed feet, a congenital birth defect that would need to be treated in infancy. Now, my husband Ryan was also born with this condition and that kept us pretty calm but suddenly we were hit with a whole lot of perspective. Our baby would be fine in the long run but getting there would take some work.
{ the view from the waiting room at the high risk clinic at St Michael’s hospital in Toronto }
By now I was 23 weeks so we made our rounds quickly through the high risk obstetrics department at St Michael’s hospital. Seems they needed to rule out any other birth defects and do their best to scare the bejesus out of me. I let them look around a bit and finally had enough when after a handful of ultrasounds and tests, they started pressuring me to have an amnio, which has way more risk than club feet, which we already had. After consulting with our midwives we happily cancelled the rest of our appointments, scheduled a meet and greet with the orthopaedic surgeons at Sick Children’s hospital and never looked back.
{ Robin 12 days old }
{ Robin the day before his 1st set of casts }
Robin was born at home without issue. Despite what high risk OBs might want to tell you, babies’ feet don’t have much to do with their delivery. Every part of him was adorable.
We started treatment at the hospital for Sick Children here in Toronto when he was 4 weeks old. He had 12 weeks of serial casts (more than usual as he’s “complex”) and was treated with physiotherapy and experimental Botox injections. I won’t lie, even with lots of baby-leggings having half your baby in casts isn’t very nice, but at least it was for a relatively short part of our lives.
Finally after all that, a few days before christmas, the last casts came off.
We were sent home with his new boots and bars foot brace and a pair of hand me down footless football pajamas. And I cried all the way to the street car stop, wearing my baby with his boots and bars hitting my legs and the realization that I had come full circle. Not only do I not care if he’s a boy or a girl, I don’t actually care “as long as they’re healthy” or not either, and I’m going to hold on to these pajamas with their cut off feet and their ridiculous football playing bear for the rest of my life.
{ good clubfoot babywearing info can be found over on the baby wearer }
I was so excited to find your website… a cousin of mine actually shared it with me b/c of your cute little felted balls for toddlers and as I was poking around I read about your son!
My son was born at home almost 5 years ago and at the time we had no idea about his clubfeet. We’d had the 20 week u/s that actually said ‘no evidence of clubfeet’ but surprise, surprise, he had other ideas
I won’t run on and on, but just wanted to say that I felt like a met a kindred spirit a bit when I read your site, both clubby-wise (what we call my son’s feet, his “clubbies” or “clubsters”) and crafty wise and gardener wise (I’m a landscaper)… all the best and thanks,
Jenni
Thanks Jenni! Clubbies is a great name. We call Robin twinkle toes and now that’s out there on the internet to haunt him for the rest of his life 😀
When our second daughter was born we were surprised by a genetic disorder neither of us carry and were quickly thrown into a whirlwind of tests and surgeries. Nearly eight years later we’re still in it. Thank you for such a lovely post about our expectations as parents and the children who show us how little we know.
PS our seeds are sprouted and ready, do you think you could add warm temps to the catalogue for next year?
I actually thought of you and some friends who discovered genetic issues after birth when I was pregnant. The fact that we knew ahead of time was very strange. None of us will have a totally easy path in life but to have so much warning and time to prepare for some of Robin’s bumps was interesting. As for good weather? I need this winter to end.
Has a certain other Catherine been talking out of school again?
Hi Katherine,
Just wanted to add, after seeing your post, that my son, Al was also diagnosed about a year after birth with 22Q11.2 Deletion Syndrome… again, no warning and we already had a healthy, robust 4yo at the time to lure us into a false sense of security that nothing would be out of the ordinary.
It does indeed cause a whirlwind and I think our minds are still catching up and having to rethink so many things. All the best to you and your daughter and sorry to butt in and interject!
Jenni
Our daughter also has a spelling mistake. Such a silly way to think about it but it does help in the explanation. When you find another parent in a similar boat you should always speak up, we’re spread too few and far between to be left standing alone.
I love this story so hard. Thank you for sharing.
Wow. What a beautifully written post. As a mother, I felt every one of the massive ups and downs I’ve experienced over the years as I read your post. It is just heart-wrenching being a parent, on good days and difficult days. Your son is beautiful, and he’s lucky to have you. xo.
I just read your blog post…directed from your interview on the T.E.S.T. website.
So beautiful, wonderful and real. I’m 19 weeks pregnant right now with my 2nd child, guilty of delaying booking that 20 week ultrasound. I too just want to ignore being pregnant and get to work! But the system just keeps creeping in:) thanks for the post!
Such a beautiful post, both the pictures and the words.
Hello,
I am 28 weeks pregnant, living in Montreal, and my baby girl, due in august, will have club feet as well. As we first heard the news, it didn’t seem like a big deal; the doctor told us it is totally treatable and everything would be fine. Two weeks later, we had some blood tests done, and I got an amniocentesis (which scared me to death!), and it was really hard to just wait for the results… so far so good (we have an appointment next week to wrap these tests up).
The more I read about it, the more reassured I am; it’s not the end of the world, and it’s probably worse for the parents than it is for the baby. And it is also reassuring to know other moms cry as much as I do about this!
I was wondering where you got the great leg warmers; I think it’s the perfect way to dress a baby with casts!
Thank you for sharing your story; I’m sure it helps a lot of parents out there.
Oh Good! Really you will all be fine:) The leg warmers are babylegs but dress socks work too. I found covering the casts was a really life saver. It keeps the casts clean and helps with the baby cuddles. Congrats on your pregnancy. I hope you get some time to relax now.