The signs that went unseen

Pregnancy comes with a lot of unknowns. No pregnancy is the same. I remember when I found out we were pregnant with Owen, so many people told me “it won’t be like your last one”. That statement could not be more accurate. Early on in my pregnancy with Owen, I had a gut feeling something wasn’t right. In the beginning, I didn’t have anything specific to put my finger on. But as time passed there were subtle signs that I didn’t miss, but everyone else did.

From very early on in my pregnancy with Owen I was measuring ahead of schedule. In the beginning, I thought it was normal since he was my second. People would always ask me how far along I was and when I would tell them they would say, “wow this must be your second!” So for a while, I thought nothing of it. However, overtime as Owen grew, I began to really be aware of his physical presence inside my body. The little flutters mothers talk about when their babies start to kick? Yeah no. Owen never fluttered. Owen karate kicked. There was nothing little or fluttering about his movements. They were deliberate, intentional, and incredibly forceful. I could literally feel him everywhere and when he kicked and turned my organs would silently scream.

Always Living Larger

I was accustomed to having a big child. Michael junior was a larger baby, weighing 8 pounds 13 ounces. So the feeling of growing a large child was not foreign to me. As Owen grew I knew he was substantial. At around 5 months I began to really question if something was wrong. I looked more like I was 8 or 9 months pregnant and my belly was so large. I remember asking one of my OBGYN’s if the size of my belly was concerning. She chalked it up to me just having large children since Michael was large at birth.

(From left to right: 2 and half months, 3 and a half months, 4 and a half months, 7 months, 8 months, Full term)

As time passed and Owen grew he really started to put on weight. They started to think they maybe got my due date wrong but I was positive of when Owen was conceived, there was no question in my mind. At around 6 months they wanted to do another ultrasound to see what he was measuring because my stomach was still rapidly growing. I literally had stretch marks on top of stretch marks. Don’t think that’s a thing? Trust me from the first-hand experience, it is! During that ultrasound, they made a comment about Owen’s stomach. They said it was incredibly large and they were concerned about gestational diabetes. Up to that point I had already had the glucose test and I wasn’t even close to being a gestational diabetic. They decided to test me again.

Preheated Pregnancy Temper

Again, I passed the glucose test but continued to get larger and larger. At this point I had strangers sympathizing with me and asking if I was due any day. I know they meant well but I wanted to punch everyone that asked me that in the face. The temper of an overcooked pregnant woman is a force to be reckoned with! Instead, I would grit my teeth and politely say, “Nope this baby isn’t due for another 3 months!” It was either that interaction or being asked if I was having twins and then responding with are your sure when I would say no.

My doctor still told me everything was fine but they wanted to keep measuring Owen and my belly since I was measuring so far ahead. They continued to give me ultrasounds every few weeks to check on his progress. During those ultrasounds, there were a few significant things that I feel would have alerted doctors, if they knew what Beckwith-Wiedemann syndrome was. One of those things was his large belly. A lot of BWS children have very round potbellies and its because their organs can be larger. Owen’s were measuring slightly larger than the norm. We also were able to see his enlarged tongue on the ultrasound. I remember the tech shocked when she saw it. She said, “wow he is really sticking out his tongue” I look at it now and am floored that no one picked up on it.

Owen’s head was also measuring very large and he was gaining weight rapidly. He would gain pounds in between each ultrasound. By month 8 I was MISERABLE. There was nothing I could do about it. I could barely walk, barely move, and up to that point, I was still working at the hospital and taking call. One night I was called in and I could not get out of our bed. I had to wake Mike up to help me get out of bed and help me put on my shoes.

Follow your Gut

When my pregnancy started to get close to 9 months I was demanding a c-section. My doctors were not sympathetic to me at all and some treated me like I was being dramatic. One doctor in particular (the one that delivered Owen) tried telling me that Owen would only be around 10 pounds and that she recommended I try to go into labor with him. I told her there was no way I was going to do that. I adamantly pushed for a c-section because I was fearful Owen would not survive a vaginal delivery. Every aspect of him I could feel in my belly and I knew there were zero chances he could safely be delivered that way. The doctor was not happy with me but agreed to schedule me for a c-section 2 days before my due date. Gee thanks!

I had an ultrasound done a few days before Owen was born and he was weighing to be almost 10 pounds. I could not understand why they were keeping me pregnant! Clearly, Owen was cooked enough and I was a million percent done. I wanted him evicted as soon as possible but they were content leaving him in there, he wound up being born full term. At my last checkup appointment, my blood pressure was slightly elevated. The doctor took one look at me and told me I did not need to be pregnant any longer and that he was going to admit me for high blood pressure. I will never forget him for doing that for me. He was the only doctor during the course of 9 months that sympathized with me.

A 6 month newborn

Right before Owen was delivered via c-section (you can read about his birth story here) the doctor looked at me and reminded me of her opinion on his weight. Being the expert she was, you know doctors are never wrong (insert eye roll) she told me what he would weigh. 10 pounds she said. If she wasn’t the one that was going to be relieving my miserableness and removing my child I would have jumped off the table and slapped her. There’s that pregnancy violence again. I looked right at her and said he’s going to be close to 12 pounds.

I WON. When they tried to deliver Owen via c-section he would not fit through the incision that was made. She told me she had to make a much larger incision than normal. I didn’t care, I just wanted my baby out safely ASAP. When Owen was finally delivered the whole room was shocked. He was the biggest baby anyone in the room had ever delivered. He was half an ounce shy of 12 pounds and he was 24 inches long. I had given birth to a 6-month-old.

After Owen was delivered via C-section. He spent a few days
in the NICU for hypoglycemia (another symptom of BWS)

Minute Details Speak the loudest

A few things that I remember from Owen’s delivery that I now know to be signs of BWS are a larger placenta (Placentomegaly), a large umbilical cord, and large amounts of amniotic fluid (polyhydramnios). I had all three of those things. Owen’s umbilical cord was as thick as a heavy-duty rope. I am talking so thick they needed serious manpower to cut through it. Now that I look back all of those things make sense to me especially the umbilical cord and the placenta. Owen was massive so it makes sense that what was supplying him the nutrition he needed was equally as massive.

I am oftentimes asked if we got early genetic testing done during pregnancy and I think that is important to talk about. Our family chose not to because we have always said regardless of what our children may or may not have, it would not make a difference. It’s important to note that even if we did have the testing done, Beckwith-Wiedemann syndrome would not have shown up. The standard prenatal testing doesn’t actually check for BWS. So whether we got that testing done or not we would not have known. You can test prenatally for BWS if it is suspected because of abnormal ultrasound, however because of the very nature of BWS (it being a disorder of Mosaicism) the test can come back negative even if your child is BWS positive.

Thankful for my story

Another common question I am asked is if I wish I knew about Owen’s diagnosis ahead of time. I am not really sure how to answer this because I think if Owen wasn’t diagnosed so soon my answer would be different than what it is. So my answer is no. I am glad I didn’t know ahead of time because I would have worried my entire pregnancy. If I lived somewhere else I may have a different answer because its likely Owen would not have been diagnosed so quickly. A lot of BWS is worrying. I have Owen’s whole lifetime to worry so I am glad those 9 months of pregnancy were worry-free (aside from my gut feeling something was different about him).

While every pregnancy is different, the same goes for every BWS pregnancy. No BWS pregnancy will be the same there might be similarities but there will always be some major differences. This is why knowing the pregnancy signs that can come with BWS are so important. I am thankful that my pregnancy was uncomplicated – aside from being incredibly large. And as hard as Owen’s kicks were, they were inspiring. I knew that in my womb God placed a fighter. A warrior. A child that regardless of what he was born with he was going to take it on fiercely and let nothing stand in his way.

Live Large & Stay RARE.

5 thoughts on “The signs that went unseen

  1. Reading this I feel like we had a very comparable pregnancy. Only difference is I went into labor at 34 weeks put on bedrest till 37 weeks and delivered via. C-section due to her weighing via ultrasound 13 pounds and me being 6 cm dilated. My OB was cautious and I’m grateful for that. She came in weighing 11 pounds and spent 2 weeks between two different NICUs. Scary first year with what felt like 100’s of speciality appts, sleep studies, and routine testing. But I could not be more thankful and blessed with such an amazing little girl. We don’t let BWS define her but like you use it as a platform to educate and share stories of hope. God bless these kiddos

    1. Thank you amanda ! God bless you to. For sure BWS doesn’t define them but id also never take it away 💚 I’m so glad you had a cautious OB. And 11 pounds that early !! Your super woman !

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