BWS Times 3

A guest blog post by Meredith Swartzendruber

Hello!! My name is Meredith, and my band of BWS warriors and I live in Maine. My husband Adam and I have two sons, Ayden (8) and Kalvin (4). All three of the males in my house have BWS…that means 75% of my family. It’s just the dog and I that do not have it (and we are also the only girls). I don’t even know where our BWS story begins…but it involves a LOT of food. 

The Origin Story

Adam and I were married in 2009, and from early in our relationship, he told me about BWS. I had done a lot of research on it, but still wasn’t sure if it would pass to our future children. Fast forward a few years after marriage, and we were having difficulty conceiving. We found out I had stage 4 endometriosis, and would have less than 1% chance of conceiving naturally, so IVF was our route to a family. Fortunately, our first round was successful and I was pregnant with our first son. I had no morning sickness, and started to show around 15 weeks (pretty early). Having gone through IVF, we had weekly ultrasounds, so I found out early that he was measuring BIG. As weeks progressed, I got larger and larger (and larger). I developed Polyhydramnios, and swelled everywhere…to the point where I couldn’t even wear shoes towards the end of my pregnancy.

By the time I was 35 weeks along, I was measuring as if I were 52 weeks…and developed pre-eclampsia. After a little bit of blood pressure monitoring at the hospital, I was told he would need to be delivered via c-section, because of his size. That night, Ayden John was born, weighing 8 lbs 13 oz, and was 21 ½” long (at 5 weeks early). He had to spend 10 days in the NICU due to not being able to keep his temperatures up (I think he just liked the heated mattress they had him on!). We were fortunate that we did not have any other complications with Ayden. He was diagnosed at birth with BWS…having the exact same mutation as my husband–paternal duplication of 11p15.5.

When he was 3, we decided we wanted to go for round two, so we went back to our fertility doctor and started IVF again. This time, I asked the doctor for a smaller one since Ayden was so big! I laughed, he laughed…I got a larger one. The pregnancy went very similarly as my first, except I started showing earlier…yay. I had an ultrasound 2 days before Christmas, when I was about 18 weeks, to find out the sex, and it was then we discovered that the baby had an omphalocele (part of his bowels were outside his abdomen). I was terrified, and I knew immediately it was BWS again. Having a husband and one other child with BWS, I knew what to expect, though. At this point, I was over 35 and considered geriatric (thanks) and high risk, so I was having ultrasounds 1-2 times a week for the last 2 months of my pregnancy. At 36 weeks, I developed pre-eclampsia again and had to be whisked into the delivery room (just like my first born) for another c-section.

Kalvin Arthur came into the world weighing 11 lbs and was 22” long (4 weeks early!)…we were taking bets that he was over 10 lbs…easy. I didn’t get to hold him right away, due to his omphalocele needing repair. The morning after he was born, I was able to hold him for the first time. He let out a cry, popped the stitches on his belly button (crazy ab muscles), and out came some of his intestines…not exactly what a mom wants to see the first time she holds her son. It was decided that he needed to travel to the children’s hospital down the street for better NICU care. We were separated for 3 days and it was awful.

Kalvin would end up spending 4 weeks in the NICU, where he received the same diagnosis as his older brother and father–paternal duplication of 11p15.5. In the early days of his stay, his omphalocele was repaired, and he had to sleep on a Bili board for jaundice for over a week. He also was not able to feed on his own, so he had a feeding tube for 3 weeks. During this time, Kalvin was not able to regulate his blood sugar, so we had to have him put on the medication Diazoxide (which I was highly against). As a BWS mother, I knew that he would require frequent feedings day & night, and I would do whatever I had to do for him.

He was released from the hospital on the meds (boo), and two weeks later had to return for another 5 day stay to wean off diazoxide. He lost a good amount of weight and wouldn’t eat, so we took him off the medication. Two weeks later…you guessed it. Back in the hospital for inguinal hernia surgery. Kalvin was 8 weeks old when he had his first hernia surgery…the second one should be this year. After that, his eating increased, and he really started putting on the rolls. We had to monitor his blood sugars for the first 6 months, but he started to regulate at that point.

From this moment

From that point on, it has been pretty “normal” in our BWS household. I had both my sons on their ultrasound schedules together, every 4 months, and they have been unremarkable. Both boys have slightly larger-than-average livers and kidneys, and my older son was dismissed from genetics at age 7, and is on a consultation basis only. Ayden has ADHD, but no other developmental concerns. Kalvin is down to renal scans every 4 months, and aged out of the AFP blood draws. He has had some developmental delays, but has really excelled this year with speech and occupational therapy. We are looking forward to having him start kindergarten next school year. 

Overall, our story with BWS is unremarkable…just a few bumps early on, but otherwise healthy. Our boys are tall, strong, and have the biggest hearts and smiles. We are frequently having to buy larger clothes, have difficulty finding extra wide shoes, cannot keep enough snacks in our cabinet, and we wouldn’t have it any other way. And that’s our story.

Live Large & Stay RARE.
XOXO Theresa

You can also watch Meredith share her story via video here ->https://www.youtube.com/watch?v=WkdH5ppILs8

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