A Cleft Update: What We Know At This Point

It's been a ridiculous and crazy week in our evolving dystopia under the new 45th President of the U.S. I've spent much more of the week worrying about the state of our country than I have for our family's well-being. While this week has been a tough one on America, we realize that our family will be fine.

This blog, of course, is dedicated to writing about our cleft journey. However, it'd be disingenuous to exclude my personal politics as it will most certainly come into play in our parenting. I only use this as an intro to let you know that we're putting our personal events in perspective in the larger political context and we're as committed to ensuring we have a happy, healthy little baby as we are to working towards ensuring that our country and our world are inclusive, progressive, and protective of equal rights and social justice. 

With that, this is our update on what we know as of now regarding our little guy's cleft lip and palate. My last post was written weeks ago, not long after we found out about the cleft. It reflects more of the immediate feelings that I (we) experienced early on when we were navigating the news. We've come a long way and we know a lot  more and we feel much more low-key and positive about what is to come knowing what we do. That said, here is what's been going on:

  • Amniocentesis results: In the previous post, I wrote about having to make the decision about whether to go through with the amniocentesis ("amnio"). For those not aware of the procedure, it's a bit more invasive than the blood test we had at around 12 weeks to determine whether the baby could be at risk of having any chromosomal abnormalities. While the blood tests for three (sometimes more if you want to go down that road) chromosomes, the amnio tests for 40-something and is more accurate because it's not just drawing from the mother's blood, but from the amniotic fluid itself. Because it's a bit more invasive, it comes with a higher risk of miscarriage. The miscarriage risk, however, is still quite low, but it's important to know that it's there which makes the decision to do the amnio much harder. We struggled with whether the risk (albeit minor) outweighed our need for having more knowledge. In the end, we decided that not knowing would put undue stress on us and the baby throughout the pregnancy. Thus, knowing was going to be better for us moving forward and better for the baby. 

    The amnio itself was quite uneventful. My sister was able to join me for it (Cory couldn't get out of the OR) and we had great providers and the baby was incredibly cooperative during the procedure. It was quick and it didn't hurt. The worst part was waiting on the results which we were told could take 10 days to 2 weeks. For us, it took 3 weeks! This also happened to overlap with the presidential election, so there were some other stresses going on. Luckily, we have a really incredible genetic counselor who I could call and talk to about it (she was also wonderful when trying to figure out whether to go through with the amnio or not) and she was able to get more info from the lab. What happened was that they weren't able to get enough DNA from the sample, so they had to grow a culture and it just took longer than normal. In the end, the results came back normal! This was a big relief knowing that the cleft was most likely isolated.

  • Labor & Delivery: Because we found out that the cleft was likely isolated, this meant we could move forward with our existing plans for labor and delivery. Our care is with OHSU's Center for Women's Health's Midwives. We participated in the group prenatal care option where we spent 7 sessions in a group with other expecting mothers and their partners. It was such a great experience that I think enhanced our knowledge about what to expect during labor and delivery and we developed a great community of expecting parents.

    Because the cleft is isolated and everything seems to be perfectly normal with our kiddo's growth, the pregnancy is not deemed as high risk (other than the fact that I'm officially "advanced maternal age"). They do, however, want me to attend regular fetal therapy appointments and have more frequent ultrasounds. Fetal therapy are essentially regular appointments with perinatal OBs who work with high-risk patients and/or patients with kiddos with birth defects. From what I've observed it's a way to ask more questions specific to the defect and for the to monitor the baby's growth and well-being. Apparently babies with a birth defect tend to have a lower birth weight. Admittedly, it's kind of nice to have more regular confirmation that the baby's doing great. And doing great he is, he's consistently measured at around 55th percentile, so right where he should be. It's also nice to have regular one-on-one appointments to ask questions of the fetal therapy OBs. In the end, the extra appointments have been a bit annoying since it means I spend a marathon day of appointments at OHSU about once a month, but they've all been reassuring.

  • What to expect after our kiddo arrives regarding surgeries and other cleft-related therapies: The truth is, this one is less clear for us at this point. What we have been told through fetal therapy appointments and the genetic counselor is to expect his first surgery to be between 4-6 months. There are also some feeding issues we are to consider (will address that separate below). We are supposed to meet with the cranio-facial surgery nurse (and others from their team) next Fri, Feb. 3rd. This appointment has been rescheduled twice - once due to the nurse having to postpone and the second because of the big snow a couple weeks ago. Cory needs to be at this appointment, so scheduling is a bit trickier to ensure he's off on the day it's scheduled. Once we have that appointment, though, we'll hopefully know much more and will hopefully have a better sense of the team that will be working with our kiddo after he's born.

  • Feeding: This, of course, will be one of the more immediate challenges we'll face. I met with a lactation specialist the other day. While she doesn't specialize specifically with cleft, she did give some insight into the mechanics of why breastfeeding is a challenge. Essentially, the cleft palate is the largest cause of the problem. The upper lip (especially when it's just one side) is less of an issue. The hole in the palate can make it difficult for the baby to create the vacuum/suction in order to ensure that the milk will go down the throat into the stomach. Otherwise, it'll just go up through his nose. In some (very rare) cases, the baby can find a way to have the breast create a suction covering the cleft, but it depends on the severity and the location of the cleft. Once the baby arrives, he'll be evaluated by a speech pathologist (yep, already!) because they specialize in identifying a baby's ability to swallow and create suction. Their evaluation will help make the decision about how best to feed our little guy.

    Thus, as I've noted before, breastfeeding is very likely not going to happen in our case. I do hope to try, but it often takes a lot of luck and trial and error to see if the baby can make it happen. However, I have never breastfed before and even in non-cleft babies, it can be difficult, so we'll just have to see. Our next option, which we hope and plan for, is for me to pump and feed the baby breastmilk through specialty bottles. 

    The last option - which we are hoping we don't have to resort to, but we're preparing ourselves for nonetheless - is a feeding tube. In the case that our kiddo won't be able to swallow effectively, he'll have to receive milk through a feeding tube through his nose. Cory probably had a bit more realistic idea about this, but I thought tube feeding, while still a possibility, would only be an immediate thing rather than indefinite. But there's a chance he'll have to be fed through a feeding tube for weeks or months. When I heard this the other day, that was the first time I cried about it in weeks. I'm glad I know that it's a possibility, but it's another hard piece of news to accept. Feeding your baby is such an intimate act and it's hard to think that intimate act will be feeding our child through a machine. Only time will tell and I'm just taking these pieces of news and rolling with it as much as I can.

  • How are we doing emotionally?: We're doing pretty good, actually. We're feeling very positive and we're really excited to meet this little guy. As of today, we have six weeks until his due date. We've learned a lot through this process and we've become stronger as a couple through it.

    Cory and I process very differently - me more external (thus the blog!) and Cory more internally. But we've found a balance and supported each other through it. It's confirmation (not that we really needed it) that we are with the right person. We are both very much in love with our kiddo and are excited (and nervous like any expectant parent) about his arrival. Although, he really needs to wait at least 4 weeks to arrive because we're moving in 3 weeks! I'm sure we'll post more on that as more news arises there. 

So, that's what we know now. I realize this is a long post, but it's an update from several months of appointments and education about cleft ourselves. 

If you want to know more about cleft in general and how we're doing emotionally now with it, check out the FAQ page on the site for more details.

More updates to come for sure!

And in case you were interested, here's visual confirmation that I'm getting much closer to having the little guy:

34 week pic.jpg
Elizabeth Doerr