Welcome to Our World, a World of Holt-oram Syndrome (HOS)

No amount of prepping can prepare me for what to say/share in our first ever blog post. Yeah, of course we have been sharing for a while across various platforms but this is still surprisingly difficult. So I guess I will just start at the beginning of why I made the decision to share about our life experiences.

In this post I want to focus exclusively on what it has been like for me being a HOS mom, the good the bad and the ugly of WHY I have chosen to share this life with you. In November of 2013 Dave and I were blessed with the exciting news, we were expecting our first child! I went through all the normal excitement and never once thought to myself..."I wonder if my child will have Holt-oram." After all, I have it and I am fine. How bad could it possibly be for my child? I wish I had thought about it. We were not prepared for the day we were told how severe Pandora's Holt-oram was presenting on ultra-sounds. I made the mistake of thinking, it couldn't be worse then what I had experienced. I was VERY wrong.

It was a gorgeous day in April, and we were walking into the doctors office for what I consider the most exciting appointment for any expectant mother, the day you get to find out your baby's gender. Everything was going great, or so we thought. After a short while the tech told us we were having a baby girl!! Then she suddenly left looking concerned. When she returned she was with not just our doctor, but a few other doctors from the practice. After each took turns looking inquisitively at our baby girl, they left us without saying a word. At this point I was severely confused, and extremely anxious. What could be wrong?

After what seemed like forever, a doctor we had never met before finally returned. At first, she explained they thought Pandora had no arms at all. Que the giant rock of anxiety forming in my gut. She then told us that they were no longer going to care for us due to this and that I needed to leave an go to another office immediately to be seen. I was only 22 at the time and not only was I having anxiety about our daughter but the thought of having to switch from the doctors I loved and trusted to some random strangers threw me into a giant panic attack.

In that moment I felt and thought so many horrifying and terrible things. I felt alone, I felt afraid, I felt guilt. After all it was my horrible DNA that was the cause of this of this unfortunate situation. I quickly began to suffer from guilt fed depression that didn't leave until a few months after Pandora's birth. Shortly after coming out of my depression, once I knew she was going to be okay, I felt inspired.

We decided we wanted to share our journey to prepare and help others through their own HOS journeys. No one should feel alone, scared or guilty.

The Kids:

Pandora is currently seven and up until she was three months old she had no movement in her arms and hands. We worked with early intervention who provided physical therapy and I believe that made the difference. Once Pandora started to become more active and we got a handle on everything we felt comfortable trying for a second child.

Jude is currently six years old and on top of Holt-oram syndrome he has quite a few other medical conditions that are not related. Which I will share about in other blog posts.

Now that you know a little bit more about our why, and who the kiddos are we can't wait to share our lives with you.

P.S.

We 100% encourage you to leave comments on all of blogs asking us questions or sharing your experiences with us. Together we can seek to understand and educate each other!

With love,

Shauna