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"Let's Start With the Feet"

I cannot believe it has been a year since walking out of our appointment with Milo's diagnosis. When trying to draft this blog post, I kept typing, erasing, typing a little more, and had to continue to take breaks. It is still fresh. It's incredible how vividly I remember the words that were said to us that day, the look on the high-risk doctor’s face as he attempted to explain what he was seeing on the ultrasound, and the feeling of having so many questions while talking to my mom on the phone during the car ride home. So here goes nothing - this is the story of February 27, 2020; Milo's day of diagnosis.

Walking into our 20-week anatomy scan, the biggest thing on our mind was whether Wesley was going to have a brother or a sister. These scans were no longer done at the OBGYN office, but at the hospital in downtown Kalamazoo. So, we were expecting to have the scan done and then talk over the results with our doctor later in the week. What we didn't know was that this was going to be the first of many, many appointments to come.


All the moms out there (and expectant moms) know that they ask you to go to this appointment with a full bladder. Being pregnant, that's not difficult to do since you seem to always have to pee. I hopped up on the table and the ultrasound technician started the scan. The 20-week anatomy scan is much more extensive than the previous ultrasound where they simply confirmed the baby’s gestational age at about 12 weeks (this is typical as few ultrasounds are usually scheduled in the first half of the pregnancy if there are no indications of anything out of the ordinary - which was the case with our baby up to this point). As the technician began taking measurements, I would always try to follow along because I like to think I know what I'm looking at. When the baby's feet crossed the screen, I noticed that they didn't seem to look quite the same as Wesley's did. I didn't say or ask anything in the moment, but just kept that in my mind. Moving up from the feet and legs on the baby, the technician looked at us and asked if we wanted to know the sex of the baby. We quickly turned to one another and agreed to find out; so she told us: it was another BOY! Holding hands with tears in our eyes, Kevin and I were over the moon.


The technician then scanned over to the chest region and let out a "hmmm...." She seemed to have had some troubles locating the stomach of the baby but honestly, we had ultrasounds and doppler-scans in the past where it took a little while for the baby to cooperate. This is when she asked me to go to the restroom hoping it would help her get a better view of what she was looking for. So, I went and emptied my bladder and then hopped back on the table. She picked up where she left off, looking for the baby's stomach. This is when she became noticeably less talkative and seemed to be hyper-focused on the images crossing the screen. She moved on to the heart and all the other organs on her checklist. I was asked to go to the restroom three additional times since initially emptying my bladder. What we didn’t realize at the time although it seems so obvious now, is that she was using this time while I was in the restroom to continuously consult with the doctors and discuss what she was seeing on the scan.

When the technician's part of the scan was complete, she asked us to hang tight while a doctor came in. We really didn't have any reason to believe at the time that anything was wrong with our baby - we thought this was all standard practice. When "Dr. X" (for the purposes of this blog post) came into the room and sat down, he introduced himself as a high-risk doctor and said he wanted to discuss a few things they found on the ultrasound that were of concern.


This is when I started to cry.


"Let's start with the feet," Dr. X said, and then began to explain some medical terminology as he informed us that our son had bilateral clubbed feet. He assured us it was something that orthopedic doctors would be able to correct with a series of castings and that we shouldn’t be too worried about this as it relates to the baby's overall well being. He asked if we had any questions, but Kevin and I were very silent and still trying to take it all in. Dr. X then said he was going to move on to the heart of the baby. He showed us that the heart was pushed all the way to the right side of the chest cavity, when it should be located towards the center of the chest. The baby’s heart was nearly touching the right ribs, to give an idea of how far it had already shifted. It was then that we heard the diagnosis for the first time - "We believe your son has a congenital diaphragmatic hernia."


This is where my memory gets foggy. I know he told us that the stomach was confirmed to be above the diaphragm and that they weren't able to see the baby using his lungs (typically you should be able to see a baby's lungs move in utero simulating the movement of breathing).


Because our scan was the last appointment of the day, Dr. X spent quite a while with us explaining that our son would need a level of care that our hospital (where Wesley was delivered the year before) wouldn't be able to provide. He suggested the University of Michigan; however, without hesitation, I quickly said I'd like to be referred to Northwestern Hospital in Chicago, if possible. Not only because Kevin's sister is a NICU nurse there, but because we have family in Chicago and Milwaukee. I knew we were going to need all the support and help we could get. Dr. X agreed to refer us there and asked us to have an amniocentesis completed the very next day so we could try to identify if any genetic abnormalities were detectable with the baby.


I remember crying, crying a lot.

As we were leaving the hospital that day I turned around and asked the ultrasound technician to write down what "CDH" stood for on a piece of paper because we had already lost track of all the long, non-abbreviated terms the doctor had said. After doing so, the last thought they left us with was "please don't Google it" since they would rather us just wait until our appointment the next day to learn more. As if we weren't terrified enough already, that didn't help.


And you can absolutely bet I immediately googled it. I googled it all night. I missed almost an entire week of work after the diagnosis - mostly for all of the appointments we had, but also because for the first time in a long time, I was not okay. The human that I was growing wasn't okay. I had no control over what was happening and I didn't know what was going to happen either.


I'm looking forward to continuing to share our story. I do plan on going further into the diagnosis, the amniocentesis, all about our Northwestern consultations, and Milo's birth story.






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