Thank you MFM!

Because we tested positive for Trisomy 21 in an early pre-screening genetics test, I started seeing a perinatologist at Maternal Fetal Medicine (MFM) once a month along with my regular midwife appointments. At each visit, I had an anatomy scan, done by a technician, and then the perinatologist would review the scan and come talk to me and sometimes take another look at the ultrasound again if needed.

Each visit, they were so nice, and excited to see our how our little guy was doing. They sent me pictures and even videos straight to my phone. I loved getting to see our little one more often than you do with a regular, low risk pregnancy. You usually just get one of these scans done at 20 weeks, but I got to do one every month.

All the ultrasound techs were awesome. They were so sweet as they tried to get Matthew’s measurements and do the full scan all while he was flipping somersaults and showing off. He did not always cooperate, little buster, but he was always willing to show us his boy parts. He just wanted to make sure we knew that he was definitely not a girl.

During my first scan, I was a bit anxious, waiting to hear the tech mention any indications of Down syndrome. The technicians usually don’t tell you if there is anything wrong, but she did mention that there was extra fluid in the left kidney and that the doctor (Doctor Carpenter) would explain more about what that means. That first visit showed a few things common with babies with Down syndrome, and extra fluid in a kidney is one of them. He also showed a missing nasal bone and extra short femur bones.

That anatomy scan was such a sweet experience. I marveled at each little body part and movement. It was amazing how everything was so fully formed at such an early gestational age. I don’t think I really appreciated that during my 20 week anatomy scans with our other children. I was probably preoccupied with finding out the gender. 🙂 This time it was just so different.

I had planned to do an amniocentesis that day to confirm a Trisomy 21 diagnosis. It’s the only way to know for sure, but it does come with a small risk of miscarriage. As soon as I saw that sweet little boy moving around inside me, saw and heard his strong heart, and watched as the tech measured his little body parts; I couldn’t imagine putting his life in any kind of danger, no matter how small. But I still struggled to make the decision. Even after the doctor pointed out the indicators of Trisomy 21, I felt like it would still be nice to know for sure. I was so torn. So, Doctor Carpenter felt around trying to find a good place to inject a needle to perform the procedure, but the only place she could find where she felt comfortable doing so was right on a ligament that had caused quite a bit of pain during the ultrasound. She said the procedure would be really painful and she didn’t feel comfortable performing it. It was just too early (I was only 18 weeks along). To me, it was a tender mercy, and I was glad that I didn’t do the amnio that day.
Thank you, Dr. Carpenter for being so kind during a really incredible but also emotional appointment.

In the end, we decided not to do one at all. The doctor had said that based on the prescreening results and the anatomy scan, the odds that the baby had Down syndrome were about 90%. So we took that as enough of a confirmation.

At my next appointment, I had the funnest technician do the ultrasound. She was super outgoing and talkative, and since Matthew was super active, it took her a while to get all the measurements, so we had plenty of time to chat. It was a delightful visit. She said Matthew got the the wiggle award for the week, and she couldn’t believe how cute his pictures turned out, even the 3D ones.

Dr. Gainer was the perinatologist this time. She was exactly who I needed for this appointment. She took her time and explained everything to me, answered my questions in a clear, concise, but not overly simplified way; and she was very straightforward with me as well, which I like. I don’t like it when doctors beat around the bush. I had heard of people who had been told that their baby would have down syndrome but at birth found that it didn’t. We were not expecting or even hoping for this outcome, but I wanted to know what to expect so I could be prepared. Dr. Gainer assured me that the type of pre-screening test I took was a reliable one that did not give false positives. That was very helpful to me, so thank you, Dr. Gainer, and all the staff that assisted me that day. I left feeling like I was in very good hands.

My next appointment was at the beginning of January. This is where I had a Doppler ultrasound done and found out that I had low blood flow through the umbilical cord (low diastolic flow) and that Matthew had a growth restriction. I had been told by my mid-wife that Matthew was small, but I didn’t really think it was serious until this appointment. Dr. Andres explained the situation and decided weekly scans to check the flow would be best at that point.

So, I went back the following Friday, and the situation had worsened. There was now absent diastolic flow. I was told I needed to go to another hospital for continuous monitoring overnight and to receive a steroid treatment. I was confused and tried to understand to make sure it was absolutely necessary. Dr. Whitecar seemed pretty anxious to get me up to Mckay-Dee hospital, but he promised all my questions would be answered there.

So, I went. And that was the beginning of an almost 2 week stay at the hospital.

I continued to work closely with Dr. Andres and Dr. Whitecar along with the ultrasound technicians and other MFM staff at Mckay-Dee Hospital up until Matthew’s birth. Thank you, Doctors, for doing all you could (and even going above and beyond) to make sure you were making the best decisions, and giving me, my son, and our family the best recommendations and care. Thank you for being so patient and understanding of our feelings and needs/desires. Thank you for sitting with me and explaining things, often multiple times. You acknowledged the weight of the situation for us; and I felt seen, heard, and cared for during what was quite a rollercoaster of uncertainty and confusion.

Thank you to Angie, one of the ultrasound technicians that I saw the most during my hospital stay. She was a delight to work with. She loved talking to Matthew as she completed the ultrasound and she always made sure to send me away with darling pictures of our little wiggle worm. He certainly did not always make that easy.

Thank you to all of my ultrasound technicians. I cannot remember all of your names, but you were all fantastic, and several of you took the chance to share your experiences with someone in your life with Trisomy 21. That was always so sweet to hear about.

Thank you to Becky, who helped do an NST (non stress test) and a BPP (biophysical profile) during one of my visits and then helped set up my Doppler ultrasound on another. Like so many of your colleagues, you were such a delight to work with. You were great at distracting me from my worries while we chatted about traveling, but you also showed so much compassion when it came to our situation; and I just felt so cared for by you, so thank you so much.

And through it all…all the worries and uncertainty…all the tests and monitoring…our little fighter came through and is doing beautifully. So, thank you to all of the wonderful staff at both Layton and Mckay-Dee’s Maternal Fetal Medicine. We are so grateful for your part in our story.