After nearly two months of exploring and using this site for support my husband and I wanted to introduce ourselves to the community and share our story. Nate is my amazing husband and we have a brilliant 1½ year-old son, Connor. On the day of our son’s 1st birthday party we found out we were expecting our second little munchkin leading to even more joy on that day.
The pregnancy was progressing well and we were preparing for our future family of four. However, along came December 15, 2011 and January 3, 2012 two days we will never forget. On December 15th, during our routine 20-week ultrasound they found a few abnormalities leading to more ultrasounds and an amniocentesis. On December 21st we had the amniocentesis in the morning and received the results by the evening. The FISH results came back that evening: normal. YAY! However, the full results came back 2 weeks later on January 3rd when we received the news we were having a baby boy with Wolf-Hirschhorn Syndrome AND Spina Bifida (a hole in his spine). This was a shocking diagnosis for us as this syndrome is so rare. I am sure all the other parents experienced that exact feeling when you heard those words.
We immediately began researching WHS online which as you know can be quite overwhelming. My husband and I were heartbroken for the future of our little boy as well as for the future of our family. Yet, once we starting reading this site our outlook changed. We saw families similar to ours who were happy and enjoying every moment with each other. Without meeting any of the families we feel as though we know some of you as we follow your journeys.
Receiving this diagnosis during pregnancy has been both a blessing and a curse. We have had the opportunity to start the grieving process, to be overly prepared for our little man’s birth, to meet with doctors, to begin to understand the diagnosis, and to get to know the community. On the other hand, it has added a layer of emotions, numerous doctor’s appointments, and just the unknown. While we are 7 weeks away from meeting our little one we are excited and nervous…and anxious.
This very rare diagnosis was unexpected and will forever change the lives we had planned for our family and our children. With that, Nate and I feel blessed as we have so much love to give and this child will be loved just as much as Connor. He will be given every opportunity to flourish throughout his life as he grows and becomes a wonderful addition to our family.
As we get to know more about our little man we wanted everyone to know more about him as well so we have announced his name. We wanted a strong name because we know he will be a fighter and a champ as well as an adorable name b/c he will be adorable. So his name is . . .
James Douglas (JD) – James is considered “one of the strongest of all names, an elegant, slashing verbal sword” according to our favorite baby-naming book. Douglas is considered strong and heroic and is Nate’s dad’s name. And we will call him JD, which is just charming
As I mentioned we have found comfort in reading your stories and will continue to follow your journeys and milestones. I know some of your blogs are private so as we get more involved in the community we would like to follow along your journey as well.
Thank you for sharing your families and milestones with us.
-Jenn
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Hi Jenn! I applaud your strength during this time of emotional ups and downs. It takes a lot to go into this journey head on. We’re here for you and your family. We can’t wait to meet you!
Welcome to the WHS community. JD sounds like he has a great set of parents and he will be a fighter. Best wishes to you in your last few weeks of your pregnancy.
Jenn, we found out about Ava’s diagnosis prenatally too, so I understand what you’re going thru when you say it’s a “blessing and a curse.” The good news is that you’ve come to the right place for support and information. Hang in there and try not to stress out during the last few weeks of pregnancy. I’ll be thinking and praying for you.
~Carissa
Jenn and Nate- Welcome! I am so glad you found this site and are able to see the miracles we have in our lives. Our little girl, Riley, just turned 3 last week and is absolutely the best thing that has happened to us. Please reach out to any of us, ask questions, we are all here for one another. Enjoy the rest of your pregnancy!
Welcome to our family; we are here for you! As someone who did not know a diagnosis before my daughter was born but had testing to be given that information (long story), I can assure you that although these times are stressful, I believe that you are at an advantage for knowing what is to come. Emotional preparation is as important…if not more important…than medical preparation. The road ahead is going to be a challenge; none of us will tell you differently. However, there will be much joy, as well. I wish you a blessed pregnancy and I look forward to ‘meeting’ your little man when he arrives!xo
Hello and welcome to the family! And might I add, congratulations on JD! He will truly be a blessing. You are about to enter a new world, a journey with steep hills, up and down. Throughout this journey you will feel happy, excited, sad, anxious, heartbroken, exhausted, angry and any other emotion that exists. No one will lie to you, it’s not easy. But everyone, I guarantee, will promise you that it is worth it. We are all here for you to answer any questions you may have, to just listen if you need someone to listen and most importantly for support in prayer. I don’t want to ramble on but congratulations and I am praying for the best for all of you!