Saturday, January 10, 2009

The Gift

As you can see by my first post, I tried doing this blogging thing a few years back. So I will try this again. On July 10, 2008 the greatest gift was given to our family. Vincent Lloyd Slater White was born into our lives. He came to us with a syndrome called Cornelia de Lange Syndrome. To read more about this take a look at this site It provides a wealth of information.

We did not know Vinny would be born with this syndrome, however, early on in my pregnancy my doctor informed me that he was on the small side and that his stomach was very small (he never measured over the 10th percentile). I was followed weekly with an ultrasound from 29 weeks gestation. Personally, I felt from the moment I found out I was pregnant that something was different. I shared this with a few friends and my family. Everyone told me that it was all in my head and that things would be fine. Once again "mothers instinct" was correct. My perinatologist said that she could not pin point what was going on with my pregnancy, "we will have to wait until he is born" is the comment I got over and over.

After many months of stress and worry, Vinny was born. Immediately I knew something was wrong- his cord was wrapped around his neck several times so they took him to the baby warmer right away (I didn't even get to see him). It took him forever to start crying- but eventually he did- it was a quiet raspy cry. This is part of the syndrome, but we did not know that at the time. The doctor wanted him to go to the nursery to be monitored instead of staying in the room with me. They were going to take him with out me even getting to see him first. Thankfully my sister said something, so I got to see him and hold him briefly.

From the moment I laid eyes on Vincent, I knew something was different about him. He did not look like a "typical" newborn. I wanted so bad to have the same type of feelings I had with the birth of Avery, Leo, and Frankie, but fear and worry over came me. Here I was looking at this little bundle that I had carried for 9 months, my perfect baby boy, wanting to know that he/we would be ok. I had so many questions and thoughts, but all I could do was cry.

After several hours, I was able to go down to the nursery to see Vincent. The nurses had him all cleaned up and my heart began to melt for him. He was beautiful! Vinny had a ton of black hair and eyelashes that did not stop. We were able to take him back to my room to hold and enjoy him. Although he looked alot better than at birth, Vinny's face was bruised and "mother's instinct" told me that something was different about Vinny.

Finally the on call pediatrician (Dr. Douglas) came in to exam Vinny. After giving him a once over he told Jim and I that he thought Vincent had a specific syndrome. He had a nurse get a medical book to go over the syndrome with us. Once he opened the book to this syndrome, the pictures of the children all had strong similarities/characteristics as Vincent did. Dr. D went on and on about the syndrome and the possible cognitive, physical, and health problems that Vincent could have. I really couldn't remember a thing he was telling us- I felt like I was in the twilight zone.

NOTHING I mean NOTHING could have prepared Jim and I for this- even though I was anticipating something to be wrong with Vinny, I was NOT prepared for this. I felt like my world had just been turned upside down. This was supposed to be one of the happiest times of my life, but I was so sad and felt so alone inside. I was angry at all of the moms/dads walking the hallways with their healthy newborn babies- wanting to know "why me"? I was so scared.

After Dr. D examined him, he said he would call a Geneticist to come in to take a look at Vinny and confirm the syndrome. Jim and I were speechless and just looked at each other- what the hell were we to do now? This was something that would not ever go away.... What would this mean for Vinny and his future? There were so many questions going through my head that I knew no one would have the answer to.

My parents, niece, and boys were in our room waiting for Jim and I to come back after Dr. D examined Vincent. What were we going to say to them? How were we going to say it to them? Jim decided to immediately go to the computer and begin researching CdLS. So I took Vincent back to the room and I tried so hard to hold it all together. I did not want to scare the kids or let them know that something was wrong. I told my parents what we had learned from Dr. D. I was trying so hard to be strong for Vincent. Through many tears and sadness, I knew I would have the support of my family. They would help me get through this. Olivia my nine year old niece said it the best that day..."Aunt Staci, it doesn't matter if something is wrong with Vinny, we will still love him no matter what!" Boy was she right!!!!

That night about 10pm the Geneticist came to meet with Jim and I. She confirmed immediately what Dr. D had already told us. She brought us a bunch of information on the syndrome and spent over two hours educating and talking with us. She informed us that this was a very rare genetic syndrome. Usually it is seen in 1: 10,000 live births. The Geneticist said there is one CdLS child born a year in Nebraska. When she left, Jim and I realized just how fortunate and lucky we were with Vincent. Some children with CdLS have limb abnormalities, major health problems, etc... Vinny had all 20 fingers and toes, he was a big CdLS baby (6# 6oz- most are under 5#). Dr. D had suggested almost every test imaginable be done with Vinny to see if he had any health issues to be dealt with. Vinny had a bone scan, MRI, blood tests, chest x-ray, ultrasound of his abdomen, and an echo cardiogram of his heart all came back basically normal. We were so relieved.

We were all able to go home after three days in the hospital. The Geneticist said that she had not seen a CdLS baby not have to go to the NICU following birth. I was just beginning to figure out how lucky we were to have this little boy.

So here I sit six months later almost to the day. As I think back to the day Vinny was born, I can not believe how much this little soul has taught me in such a short time. I am truly blessed to have this little boy in my life and I feel so fortunate that he is in our family. It is amazing what I learn on a daily basis from him.

All of the professional images that I post are taken by the most wonderful photographer in the world! Check her out!


  1. Thanks for sharing your story.
    Since "Blue's" differences were more obvious, we knew about them in the 1st trimester and quickly suspected CdLS. This really did help me a lot to be prepared, but you're right that you can't be fully prepared.

    That is really encouraging that Vincent didn't need to spend time in the NICU. He seems to be doing very well.

  2. aawwee! i have loved reading about his debut into the world! i know your feelings well. but we are truely blessed by our kiddos aren't we? and he is so handsome!

    give him a squeeze for me!! that's all i want to do... pick him up and squeeze him.. gently of course LOL!

    sorry, i get like this sometimes.. i'm really not too flakey 90% of the time! i am glad that you started blogging! :)

  3. I love reading these stories because they sound so much like the way I felt the first time I hear about CdLS. No one could have possibily convinced me of the joy that had just entered my life.

    I'm so glad to hear he's healthy, too! Isn't every test that comes back normal the BIGGEST cause for celebration?

  4. thanks for sharing, it feels good to relate to someone else.

  5. Hi. I think you sent me an e-mail awhile back through our blog & I just wanted to say Hi.

    I got teary reading your post. I can totally relate to that "why me?" feeling and just being completely, completely overwhelmed. I've had two kids with CdLS & sometimes I have a double "why me?" moments.

    I just want you to know that Vinny is ADORABLE. He's the cutest thing. It's amazing how much all our kiddos look like, too. His pictures totally remind of Hope.

    Anyhow, I just wanted to say Hi. I can't wait to learn more about Vinny & your family & share your journey.

  6. Hi, have loved coming across your blog. your story rings so close to home. Our Tae was born 1st August 2008.

    love your photography too - just stunning. Will look forward to following your blog (in my very scarce spare time)

    Cheers, Deni :)

  7. Hi Staci. I finally found time to come over and check out your blog. I'm so glad I did because Vinny is adorable and reminds me so much of my Anna at that age.

    After some prenatal growth issues, she was born at 4 pounds 5 ounces. I was prepared to hear that something was wrong but instead was assured that everything was fine. It wasn't. She was finally diagnosed with CdLS at 22 months of age. (My little girl is now pushing 13.)

    As you can tell from the comments so far - and others you meet on Facebook and in Nebraska - you are not alone in the journey. We've all felt this way.

  8. Hi,
    My name is Alexis and I reside in Florida with my husband and 2 sons Andrew age 5 and Destin now 20months. My little guy Destin has had a very rough start to this life, and for over a year we didn't know why he was having such trouble. So this last summer we drove little Destin to Ohio to see the specialist at Cincinnati's Children's Hospital and we recieved the diagnosis of CDLS. After speaking with so many CDLS family's this past week, I have come to one conclusion. Just because our little angels have been diagnosed with a very devistating syndrome, doesn't mean that they can't shine beyond. They are miracles.