An Introduction to Our Cleft Journey

Hello Friends, Family, and Blogosphere,

I'm pregnant. This is our first baby and it's been an exciting, shocking, and interesting journey thus far. While I'm currently at 31 weeks, the last few months have been bumpier than one expects. It's been an important journey to discovering that nothing goes as planned (an intro to parenthood in general, I'm sure!). 

At our 19-week anatomy ultrasound, my husband, Cory, and I discovered that our little boy had a cleft lip and likely a cleft palate. We didn't even know this is something you could find out in-utero or even thought it was a possibility. 

Because I'm a writer, most of my posts on the blog will be creative writerly journal-type entries to serve as updates to friends, family and anyone curious about cleft. But for this first introductory post, I'd like to share a part of an email we sent to close friends and family about what this journey has been like for us thus far. Subsequent posts will help fill in the gaps on details from the last few months and then of course, when our little guy is born, we'll use the space to share updates and photos.

With that, I'll pick up with part of the email sent on Dec 18, 2016:

[...]This news completely threw us for a loop for a number of reasons (will go into some of that later), but it also brought up new worries as cleft can occasionally be related to other chromosomal abnormalities. Cory, having done anesthesia for cleft surgeries, was all too familiar with those challenges. So this launched us into a series of tests including an amniocentesis. In the end, the amnio came back normal, but it took 3 weeks to find out! So, at 26 weeks, he seems to be growing normally and is a perfectly healthy little guy as far as we can tell!

Now, onto some frequently asked questions and some reasons we wanted to share all this with you.

Why we're telling you

Well, the most obvious is because you're our friends and family and we want to keep you in the loop! But another reason is that we wanted to make sure our close circle knew in advance. Cleft is very visual and it helps us to know that you are all prepared. Also we want you to know so you can love and support us and our little guy as we go on this journey.

We do ask you to think before saying "but it's fixable." I don't blame you for thinking that at all or to anyone who has said it to us already, it's most certainly what I would say to someone in our position. In the end, it's not that big of a deal. We know we're lucky, but there are a lot of emotions we're dealing with and it feels like it diminishes those a little bit. We don't want you to be sad for us (we're not sad), just understand a bit more what this journey means, which is part of why I'm sending this email.

What does this all mean and how are we feeling

Outside the fact that there were other worries that go along with the cleft diagnosis, the cleft itself was a huge shock and quite emotional for us. While we know it's fixable and are so grateful that the cleft seems to be the extent of it, there's a visceral sense of loss a parent feels. It's nowhere near the sense of loss of a pregnancy or a child, but there is a sense of loss indeed. I know from the outside it might seem like it's not a huge deal - and in the grand scheme of things, it isn't. But as many of you who are parents know, you have certain expectations of how your little baby will be when they arrive in the world and what the experience will be like. Of course nothing ever goes as planned, but this did affect us quite a bit.

For me initially, the biggest sense of loss was around breast feeding. While it's not impossible, it's highly unlikely I'll be able to breastfeed. It's something I expected and hoped for and still gives me pangs that it likely won't happen. While I've accepted it, it's made me acutely aware of our culture of shaming/judgment around breastfeeding and other birth and parenting choices one makes and in many cases the choices one can't make.

Additionally, we are preparing ourselves for complications when he's born. While he seems very healthy in utero, the cleft can cause some issues right away, so we're mentally preparing ourselves for him to be taken away for treatment after a brief cuddle from us. When he's born, the docs will be able to assess the severity of the cleft. We already know it is from his lip to his nostril. They can see that there's likely a cleft palate in the ultrasound, but that's the unknown that will become clearer when he's born.  

The other element we're having to prepare for is that our baby will experience multiple cranial-facial surgeries in his first year. OHSU has an outstanding cleft team and we feel really lucky to be where we are. We've been told that his lip repair surgery (one among multiple surgeries in his first year) will likely be around 6 months, but we'll have more details when we meet with the surgery team later this month. But from what I've read, we'll have regular check-ups and do quite a bit to prep our little guy for the upcoming surgery.

In the meantime, I have more frequent ultrasounds as a birth defect can sometimes be linked to lower birth weight. But at the moment he seems to be quite average in growth. We'll also be in "fetal therapy." Essentially that's regular meetings with the team we'll be working with to prepare us for feeding, the surgeries, and other therapies after our little guy is born.

In conclusion

Thanks so much for reading all the way through. Cory and I feel really optimistic and excited to welcome our little guy. I suppose what we ask from you is to support and love us through all of this. We are grateful that it's nothing worse, but we're preparing ourselves for what is to come and know that you'll be there to support us.

Love,

Elizabeth and Cory