What’s Going On?
A couple weeks ago, I posted a slightly enigmatic message to our Instagram stories, saying I needed time to process some information and would be taking a break. I didn’t do it to be attention seeking, but rather the opposite, to actually avoid lots of messages saying “where’d you go” when I suddenly didn’t post for a while or interact with anyone. I’m actually writing the first half of this on the day I posted that message, while it was still raw and I needed to write this as a way to gather and process my thoughts. Super personal posts like this are rare for me, and are incredibly uncomfortable to share with strangers. But, I have always promised transparency in the good, bad and ugly of life on this blog, and there’s no way I can say any of this succinctly in a few Instagram stories. So here’s what’s going on….
May 19th 2021
This morning, I had my 20-week anatomy scan for our third baby, a few weeks late as scheduling issues at the hospital make getting an appointment difficult. It was a chaotic morning already, as I had accidentally scheduled it on the same day as our son’s speech therapy lesson so Stu was taking care of that, our daughter is going through a particularly “big feels” phase meaning crying fits are common, especially if she is separated from her brother, and to top it off our son woke up with a severe cold – meaning Stu couldn’t join me at the ultrasound anymore like we had originally planned. The 20 week scans we had for our first two kids went ahead without any drama, and I’d already had the fetal echocardiogram two weeks ago ruling out any heart defects (as my dad had a congenital defect, our babies always get a thorough extra check). So I walked into the appointment without any fear or concerns. The baby was kicking regularly, I felt good, all was fine.
When we had our kids in Atlanta, the doctor actually did the sonography themselves, whereas in Philly the tech takes all the pictures while a doctor looks on to the images transferred to their computer in another room. I knew this was happening for the echocardiogram, but for some reason didn’t register that it was the same process for this scan. The sonographer throughout the scan was very cheerful, and gleefully exclaimed the baby had a beautiful heart, flow in and out of the placenta was good, and we were 20 for 20 on fingers and toes. She mentioned that baby boy had long arms, and that they were stretched behind his back, but that was the only out-of-the-ordinary comment. A medical student had been in the room for the first half of the scan, and then she got called out of the room. It didn’t even click with me that this was a red flag.
When the tech finished, she handed me a few pictures of baby’s facial profile, none of the whole body, and said she’d be back with the doctor in just a minute. I was still oblivious at this point, as when the doctor came in, I had my bag on my shoulder, standing up, ready to get the quick all clear speech and head home. I even texted Stu to say I’d be leaving in a few minutes.
He repeated a lot of what the tech had said, all the body measurements looked good and healthy… and then came the BUT.. the feet were abnormal. “Come into my office and we’ll discuss further”
One of the 5 profile images the tech handed me… I’d always been given foot, hand, body images before.
Our baby has bilateral club feet. Despite no family history whatsoever (it’s often genetic) and no signs of other physical deformity, our baby will be born with feet that twist inwards and upwards. The doctor said it is “isolated” meaning they don’t believe that it’s part of a bigger chromosomal issue and that of “all the deformities we have to tell parents about, this is one of the “better” ones” because it is very treatable. Shall I tell you how that didn’t make me feel better? Or can you guess? He then talked a bit about how an amniocentesis could search for further chromosomal issues, but that I was late in the pregnancy, miscarriage risk was high and reasons to do it (abortion) were not really on the table. Those three words in one sentence – amniocentesis, miscarriage and abortion immediately sent me into an emotional tailspin.
I tried to keep my shit together in his office and listen to how it will be treatable, and my baby would still walk and run normally, but probably never been an Olympic athlete unless they swam. I tried to joke that I was a good swimmer, so that was a fine option. But all I heard was how young the baby will be in full plaster casts on his legs (starting at only one week old), a brace that will last into his toddler years, and the word surgery being repeated over and over. No matter what the problem, no mother wants to hear that their unborn child has an issue and it is crushing.
I left his office with my mind racing, confused, bewildered. I felt completely and utterly blindsided. I stood in the hallway between his office and the reception crying to myself, trying to gather my composure to go back into the reception area full of other pregnant mothers, and schedule the next ultrasound to “double confirm the diagnosis” in 4-weeks time and to begin discussions with a paediatric orthopaedist about our baby son’s skeletal dysplasia.
I reached the car and broke down again. And then, I oscillated between trying to gain perspective and my pregnancy hormones taking control, which remained a constant battle for the rest of the week… I had recently discussed with another friend about a 20-week scan where the baby had 50/50 chances of living at all (as a first born), where an amniocentesis was necessary and where they were just trying to remain optimistic that the girl’s lungs would grow big enough to survive. How could I possibly feel so torn up about this, when my baby was otherwise healthy but just with deformed feet. We are privileged and have great health insurance, he will be able to get the care he needs and still walk within normal developmental milestones. I reminded myself many children around the world don’t get that privilege and are born in 3rd world countries where they are permanently deformed for life, not just a few years.
But I also had the maternal part of me to contend with – I’m due to get a c-section for a third time which is major abdominal surgery that means you can’t do anything for about 4 weeks, and can’t drive for 6-8 weeks. This baby would need to get full plaster casts starting at 1-2 weeks, with a new set every week until 3 months old. The burden suddenly shifted to Stu, who was already going to have full hands with our current two children. We had already found it hard enough shifting from one baby to two during the c-section recovery as it is so intense, and I’m completely useless besides feeding the newest baby. Being useless is not a state I am comfortable with even at the best of times. Add to that, I’ve always struggled with the first few months of new-born life mentally, have a difficult time breastfeeding, and these measures to resolve the club feet were going to make all of that so much harder. Not to mention, I’d have to watch our tiny baby in pain going through this process including a minor surgery at only 3-4 months old. It’s temporary, Lex, it’ll be temporary. You are quite lucky. But seeing the positives when you’ve been blindsided and already feel things very deeply are really hard. So I googled, and wallowed, googled and wallowed.
I knew I shouldn’t be googling, I’d learned my lesson on that from two ectopic pregnancies in one year, I thought. But no, off I went. “Club feet + environmental factors” (was it my fault with all the DIY?) “Club feet + mercury poisoning” (have I eaten too much fish?) “club feet + lead paint” (is it all the old house renovation?) “Mother of club feet baby” (how bad will this be?) “Club feet + breastfeeding” (much harder apparently…)
Everything just felt so heavy and I’ve spent most of the day in and out of tearful fits.
12 Days Later – May 27th 2021
A little shy of two weeks later, I can’t say I’ve had an easy time processing all of this. I wear my heart on my sleeve all of the time (both a blessing and a curse), and as mentioned above, when pregnancy hormones are added to that, I find it really hard to control those emotions and stay stable. I continued oscillating between pragmatic and emotional responses, and tried to lace them both with perspective.
The pragmatic response is that we cannot change anything. Whether it was my fault or not doesn’t change a thing, the baby is how he is and we now need to move forward with taking care of him in the best way possible. Yes, there is a chance of a much bigger problem (like a chromosomal defect that could cause this), but we cannot change that either if it even exists in its 1% possible state. And worrying about it for the next 14 weeks does nothing to help anyone, and would make the situation worse, so we can’t. If something bigger exists, we will find out when he’s born and deal with it then. As Stu kept saying to me the first day, it doesn’t mean we’ll love this child any less or treat him any differently than our others. And he is absolutely right. Stu is our resident stoic, and the king of dealing with major emotional moments with pragmatism.
My emotional response continues to be triggered every few days, or upon finishing writing up this post – but that’s normal for me. I realised (with some lovely friend and sister-in-law help) that trying to compare our small situation with that of someone who was dealing with a disorder far more devastating and life-threatening to gain perspective, was only serving to invalidate my own feelings. I have every right to feel upset, sad, angry, confused – any mother would. Scratch that, any person would. It is a life-changing event, and it’s ok to not be ok. I don’t always need to be strong and brave. Especially when the baby doesn’t even “need” me yet, I can take this time to be vulnerable. Much like being physically useless during a c-section recovery, a state of vulnerability is not natural for me either.
I also realised, and am allowing myself to feel, the sense of “loss” that I could finally label. Hopefully, we will have an otherwise physically and mentally healthy baby and I’ll keep all the things crossed to hope for this. But, it is definitely our last baby and I wanted to soak up every kick and moment of this pregnancy and those first few months of new-born time, knowing it would be the last time I got to feel those right hooks to the ribs inside and tickle those tiny feet outside the womb. I was desperate to make breastfeeding a success this time round being my first time without a ball & chain corporate job, and lacking all the stress that came with pumping, scheduling, and trying to produce X amounts on a timeline. I couldn’t wait to see baby #3 in the same onesies that our first two wore and have the pictures comparing the three of them all side by side. And now, I won’t get any of those things. These last 14 weeks of the pregnancy are now over-shadowed by this news, and every kick makes me think about his feet. With full plaster casts, our babies feet will be hidden under the cast (when they’re freed they are apparently extremely sensitive and touching can hurt), unable to fit into any clothes with legs, and breastfeeding with c-section recovery wounds is going to be a major hurdle to overcome. Doctors appointments are going to crowd the first 3 months of life schedule, right as we’re moving the other two to a new closer school and trying to get our current son potty-trained too. I know life is going to be a chaotic mess come September and I’m going to struggle to take in the good moments – so I feel this sense of loss at all those moments we won’t get now. And I feel a foreboding sense of loss regarding the attention I know my current two children won’t get from me.
No More Full Length Onesies
I screenshot this image of a cute little magnetic footie the day before the ultrasound. These are the sorts of clothing items the baby won’t be able to wear for the first 4-6 months.
But I’m trying to take it one day at a time. It all feels heavy still, but I can at least step back and see some pragmatic approaches now. Throughout all of this, I’ve continued to get on with house planning, projects, DIYs etc. and am continuing with our One Room Challenge boot room space. But I knew that every minor set back with that room (of which there have been several in these last two weeks) would cause an emotional reaction out of line with the severity of the setback (minor) because of all the baby news. So with that in mind, it was better to take a mental break from Instagram in posting anything and just enjoy other people’s stories as a distraction, rather than drag you all through this emotional rollercoaster with me and bear the added weight of responding to people (which I normally love doing).
So there you have it. The whole story. Lots of writing, and a slightly more stable Lex now who can get back to sharing DIY stuff (of which the list is extensive) for the next 14 weeks until this little cutie makes his appearance with his funny looking feet.
Love & cuddles,
Lex