My baby has Williams Syndrome?

It’s been 10 years, 4 surgeries, hundreds, if not thousands of therapy and doctors appointments, as well as dozens of unique challenges that turned our life in a different direction when Carter was born.

Our first born, we were excited and clueless as hell, but that’s most new parents… really. When someone asks about what Williams Syndrome is, first, I should say, this is rare. It feels like most of the people I talk to feel like they should somehow already know at this point. He’s 10 now, after-all. But really, if it’s not a part of your daily life, I don’t expect you to know or understand. So, I’m happy to tell the story. It brings awareness and helps him carryout his mission: To bring joy to the world.

Over this series, I plan to share about:

  • The story of when we learned our son has Williams Syndrome (WS)
  • How having a child with WS is different from having a child who does not
  • How to support someone you know with a special needs child
  • Stories to better understand extraordinary gifts and unique challenges of Williams Syndrome
  • Tips, tricks and items that made challenges easier along the way

Let me tell our story.

When our oldest son, Carter, was born the doctors said some scary things.  Any attempt to gently warn us that something might be wrong fell on deaf ears with me. I actually remember blocking it out. I was sitting in the hospital bed, just hours post-op from an emergency cesarean. I literally couldn’t feel my knees and it was like a movie when music starts playing and you can hear the doctors talking, but you can’t understand what they’re saying. It was exactly that. I caught enough to understand this…

“We aren’t sure what’s wrong with your son…” 

Now me, being the positive thinker I am, it pissed this new momma off. Why the hell would they come in here with this fake negativity and tell me there’s something wrong with my baby when there clearly is not?

Paul helped me fill in the blanks.

“We aren’t sure what’s wrong with your son, but… we think he may have something wrong with him. He has several abnormalities (4-5 of them). Now 1-2 can be normal and explained through family traits, but typically not 4-5 of them.

Some of the things they noticed were:

  • a low hair line;
  • shorter forearms;
  • shorter thighs;
  • a bridge in his inner eye; and
  • a long space between his nose and his lips

williams syndrome 2 diagnosis

I wouldn’t have noticed any of the above characteristics without literally measuring him the way they do in hospitals, so at the time, it made no sense to me.

So to say that I didn’t accept this news well, was an understatement. Absolutely no class, let me tell you. I gave them best RBF and brushed them off. I cried and used my optimistic attitude to pretend like they have no idea what the hell they are talking about. Even though they are doctors… Yes, I realize how ridiculous that sounds.

We got home and our little man really struggled to eat. At first I thought, well nursing is hard so of course we are having troubles. Eventually, we tried a bottle. When that too was a struggle and we could tell that Carter was in pain, we brought him to the doctor. It was determined that he needed some acid reflux medication, but while listening to his heart, his pediatrician also heard a slight heart murmur.

Luckily, the next day we were able to get in to see the cardiologist. It may have been over 10 years ago, but I remember this day like it was yesterday. I brought my squeaky wiggly 4-week-old baby boy and laid him down on the crinkly paper to be examined in a dark room. I was able to lay down next to him while they lathered his baby chest with petroleum jelly. Upset that it was cold, I comforted him and his sweet little lips protruded. Praying that all was well, the 30 minutes it actually took felt like 4 hours… and unfortunately the technician cannot tell you anything. The results have to be read by the cardiologist.

It wasn’t much later, I met with the cardiologist to hear the results. Carter did have a small hole in his heart. One that we would continue to watch closely. What we were not expecting to find out that cool fall day, was that this doctor knew what the pediatricians prior to him did not. He knew my son has Williams Syndrome.

Minimizing it still, like I did the day he was born, I casually asked for a brochure. You know, like this is something that will go away, like lice or something.

Yes, I actually thought it was going away. See… clueless!

He eased into it a bit and said, ‘No, this isn’t something we see often. This is a very rare condition.’ He shared with me that my son would most likely have learning delays, experience feeding and texture problems and typically have extensive health concerns, including problems with his heart.

After this brief, casual, life-altering momentous conversation, we were directed to the lab for a blood draw. The first of many blood draws Carter would experience in his life. This was the hardest part of the day. The moment I knew what was likely wrong with my son, but I had to keep it together (at least until I left the hospital).

Or so I thought, but this is for another blog post altogether.

My husbands work didn’t allow him to attend this appointment, so in the short walk from cardiology to the lab, I called to update him. That, and I wanted him to Google the syndrome.

Seriously, what is this?

That day I learned that 1 month old babies have teeny tiny little veins. Their veins are so small that you need the tiniest needle and laser accuracy. The first attempt caused Carter’s blood vessel to burst. A screaming tired, hungry baby who is now in pain from a bruised arm and I needed to pump in the worst way because at this point, I was well past my normal schedule. I had nowhere to warm up a bottle and I started to grow frustrated.

My expressions said it all, so the nurses kindly offered to give us a few minutes. It was a moment of stress, but also a moment of solidarity. One of the very few times he was actually willing to latch on and eat was right at that crucial moment. He didn’t eat long. The low tone in his muscles made him too tired to keep going, but he was no longer hungry and that’s what mattered at that moment.

Eventually a phlebotomist did find his little vein. They made a call to a gal from another area of the hospital who came and found his baby vein on the first try. She must be the expert they call in when necessary. That day, it didn’t matter who she was. I wanted to hug her. Then cry on her, but I didn’t. I left. I packed my 1 month old perfect beautiful little boy in our car and I called my husband to get an update on his Google research.

The short story…

“It’s not good, honey. Williams Syndrome encompasses developmental delays and medical problems. Usually people with WS live with their parents for the rest of their lives.”

williams syndrome 1 diagnosis

Part 2 – click here.

Please comment, share and ask any questions that you are curious about so I can include it in the next post.

xoxo

Kerri

If you have any questions for me, please contact Kerri Kava at 1MinnesotaMom@gmail.com or on social media at:

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