Unexpected Finding: Twenty Week Ultrasound

“Well, things look great and I know you are transferring your care completely to your home birth midwives, so this is the last time we will see you. Best wishes on everything!”

This is what I fully anticipated hearing from the doctor after he took a look at our 20 week ultrasound of our sweet little girl. After a successful home birth with a fairly easy pregnancy and now having no complications with this pregnancy so far paired with my overall good health and fairly clean family history, we were quickly packing up our bag waiting for the doctor to come in, give us our discharge papers, and head to get breakfast. The doctor came in with a different tone, though, bringing the unexpected.

A couple of days before, I had started to feel extremely anxious about this scan. I thought perhaps it was just all the emotions coming together about the reality of adding another child to the chaos. I thought it was mourning this season of having just one child and fear of the unknown. I thought maybe it was even from not knowing what gender our child would be. Anxiety seemed pretty normal before a scan. After all, if we weren’t finding out the gender we most likely would have skipped this scan anyways.

Gender Ultrasound heart defect

The ultrasound, I remember, took a little longer than I anticipated but I didn’t think anything of it- I didn’t really remember how extensive these scans usually are and I was watching my husband try to keep reins on our toddler throughout so I thought it just SEEMED long.

Our doctor walked in with a stack of papers I knew was thicker than a discharge paper. He walked in with a somber expression and shortly after, he brought someone else in with him. They explained that they had found a complication during the ultrasound- on the heart. I realized that she HAD spent a lot of time on the heart, but she also was saying that the baby’s angle made it really hard to see what she needed to see, so I wrote off any issues. I could see the 4 chambers and didn’t realize there was more to look into than that.

There are a number of congenital heart defects… and ours has a combination of 4. The one I understand most- an opening that allows the oxygenated blood and the non-oxygenated blood to mix. Not what you want the blood to do. We were told that most likely she will need immediate surgery. My tiny, sweet, baby girl will need surgery… and possibly right away. This may be the only complication, but it can often be tied to other chromosomal complications.

I don’t remember a lot of what was said in that initial conversation.

-There is a problem.

-If this is the only problem, odds are high especially with early detection.

-You’ll have a team between two medical centers on this case.

-The doctors would like to have further testing

I've never really allowed myself much grieving. I adopted pretty early on some internal desire to "hold it all together." I felt weak if I felt vulnerable. I thought positivity was linked to hardly acknowledging pain and covering it with a "bright side."

This is the first season I can recall REALLY allowing myself to feel my pain. To stay in bed longer than I usually would. To cancel plans. To cry, yell, and just remain in a state of confusion. In all of that... I am learning how much I sometimes to allow myself that experience. I think we all do.

So for now, we know there's a problem. We aren't sure how big or extensive it is. We don't know if anything else is linked... but we know this isn't going to go exactly the way we imagined. In so many ways, we know that's all okay. In so many ways, though, it still feels scary.

tetralogy of fallot heart image

Update #2: June 15, 2018

It has been 2 weeks since the doctors surprised us with an unexpected conversation. Two weeks since my reality shifted. Two weeks since I started to feel out of control. A diagnosis which led to tears and fears and was coupled with the unexpected passing of my grandmother in the midst… It seems so long ago, and yet it was just two weeks.

Our test results, they would take up to two weeks. And so here we are today. And I wait for a phone call… not because I’m excited to pick it up, but because I must. Because it seems to be a sort of telling sign of life to come for me.

That first phone call update let us know that all of the PRELIMINARY testing looks good. I didn't realize there was more than that. However, this met us with good news. There doesn't seem to be any duplicate chromosomes. This was important news because other complications could alter the path of treatment and the long term association with the heart defect. Now, we are told, we wait for another set of testing to see if there are any MISSING or incomplete chromosomes.... which could again link to further complications. With the passing of my grandma, I have sometimes forgotten about what all we are awaiting. Sometimes, the two situations pile on together and leave me feeling at my weakest. Sometimes, I know that my little girl will be just as tough and a leader of the family just like my mamaw was.

Update #3 (June 24, 2018)

This week brought the final test results as well as an echo sonogram. Both yielded good news for us. Our chromosone testing all came back normal. A couple of months ago, you would have never heard me say "I hope my baby ONLY has a major heart defect." But here I am. Feeling fortunate that there seemingly are no other complication factors to account for when planning for this little girl. This means there aren't additional complications to factor into her surgeries and long term treatment. I have come to know a number of people who are working with both a heart issue AND more- and they are absolute rockstars.

tetralogy of fallot mom blog

Our echo sonogram was a hopeful appointment as well. If you recall in the first update, we were told in our initial appointment to prepare for immediate surgery. This left me mourning all things early infancy with my babe. I was so fearful we wouldn't get that early bond. I was afraid breastfeeding wouldn't be established. I was afraid I would feel detached from my baby if we were immediately being treated in two separate facilities. My first birth was a homebirth. We kept the placenta attached for a long time. After birth we snuggled in our own bed for hours/days. He breastfed like a champ. I felt so bonded in those moments that I loved more than anything (Probably my favorite part of motherhood.) To feel like that would be stripped away felt like I wouldn't know who I was as her mother. Now, after our echo sonogram, the cardiologist looking at our images believe that- if things stay relatively similar in growth pattern to the way they are now, we will be able to wait 4-6 months before having her first surgery. This would allow her to grow bigger and stronger for surgery as well as give us the chance to have that early family time together. While we know immediate surgery could still be an option, we are hopeful that we will have that time. We will know more after our 3rd trimester echo sonogram scheduled for August 28th.

I'm feeling much more normal now. Much more like this is already a part of our story. Of course we have this medically fragile but tough as nails little girl. Of course we were meant to care for her and have her as an integral part of our family. Some days it still feels extremely overwhelming (mostly when Emerson is showing all of his toddler colors and I'm not sure how to handle him without absolutely losing it... but then I think back- I had no idea how I was going to transition into motherhood the first time. I had no idea how I was going to transition into being a stay at home mom without a career identity. I had no idea how I was going to transition to more friendships centered around the park zoo. I had no idea how I was going to function after limited sleep. I had no idea how I was going to recover from mastitis when E was just a week old. I had no idea how I was going to do any of it because the changes all felt so big...

and yet every night I lay my head down and realize, we're doing it. Maybe not perfectly. It might be super messy. We might not know if we're doing it right... but we're doing it. An unexpected finding at our 20 week ultrasound, the discovery of Tetralogy of Fallot, is just a piece of the story we’re building together.

And with baby girl, we'll be doing it too.