Hello everyone, my name is Chrissy, and I'm am the very lucky mom of Aiden...and this blog is meant to share our lives and some what educate everyone of the very rare syndrome that Aiden and I both share. It is called Nager's syndrome, and if you interested in learning more....here's a link...http://www.faces-cranio.org/Disord/Nager.htm . That's a basic description of the syndrome. The syndrome doesn't define us, but it does come with it's hurdles. One thing that's for sure...Aiden sure doesn't seem to be affected. He's a happy, carefree "Luv Muffin" and nothing will stand in his way!!
In May of 2008, I found out I was pregnant....and both Juan (Aiden's proud Father) and I were happy, yet apprehensive. I was always told that I should not have children. I was told that any child I have will most likely be "afflicted" with the same syndrome that I have (which at the time they thought was Treacher Collins)...which may be much more severe than my mild form. But Juan and I were both estatic!! It gave me new purpose in life and I immediately fell in love with our baby.
Right away we were referred to specialists who monitored my pregnancy very closely. They noticed pretty quickly that our son was showing traits of the syndrome in the ultra sounds. (Note the very small jaw...) We took a deep breath and accepted the news with open arms . We wanted so badly to hold him in our arms. The specialists decided that I should schedule a c-section with a team of the best ENT doctors at hand so that when Aiden entered the world, he would have the best chances possible. There was a high probability that he would have trouble breathing and that it would be close to impossible to intubate him. We were prepared and ready!!
The day came for delivery...and were we NERVOUS!! and very excited. We didn't know what to expect!!! The delivery went well...but the first words we heard was..."he has no thumbs!" I'll never forget that...I don't know why. It wasn't that I was distraught about Aiden having no thumbs, it was the way they shouted it....like it was such a shock. Anyways...we heard Aiden cry...one of the few times we heard him cry. Juan watched as they cleaned our new 4lb. 4oz miracle. He told me that he was beautiful and he was healthy. Then they let me meet and touch him before they took him away to the NICU.
Once I was in my room...recovering from the c-section, we were visited by numerous doctors. We were told that indeed Aiden had Nager's Syndrome, NOT Treacher Collins. He had severe micronanthia (small lower jaw) and he had to lay on his stomach to prevent his tongue from blocking his airway. We were told Aiden would need a trache and he would need it soon. We were also told he would need a g-tube (gastrostomy tube). It was a lot to take in.
Five days later, we first had Aiden baptized, then he was taken away to the operating room to have his trache put in. It was terrifying. Our son was only five days old and he was going through major surgery. We were told afterwards by our absolutely wonderful ENT specialist that it was the hardest tracheostomy he has ever had to perform, but that he didn't give up and he can now sleep at nite knowing that Aiden had a safe airway. To this day, Aiden and Dr. AJ Hotaling have a special bond. For the next two and 1/2 months, we drove back and forth to the NICU to visit our son, learning how to care for and change a trache and g-tube, learning what to do in any possible emergency...waiting to bring Aiden home.
When the day finally came...it was overwhelming. I felt like I gave birth all over again. (only not as painful!) I sat in the wheel chair with Aiden in my lap and as I was wheeled out, I couldn't contain my tears of joy as all of the NICU nurses and doctors applauded. Juan and I were finally bringing our son HOME!!! But let me tell you....it was scary. Luckily we qualified to get nursing for Aiden 9 hours a day. Not only did I have to learn how to be a mommy....which you can't really do while in the NICU....I had to learn how to be a mommy for a baby with a trache and g-tube. But with Juan's support...a LOT of his support...and with the help of Aiden's nurses, we adjusted quickly. Today I feel like it's all second nature. Aiden is the sweetest...HAPPIEST baby in the world! Our world, anyways.
It's been a tough 19 months. Aiden had to endure a craniotomy to unfuse the front plates of his skull and ended up with a staph infection...MRSA none the less! 18 days in the hospital. But now he's healthy and thriving!!!! The next step is his FIRST of two jaw distraction surgeries, which is HOPEFULLY coming up September 9th. Here's a link explaining the jaw distraction procedure if you are interested. It's amazing what they can do these days! http://www.pedsent.com/surgery/swfs/distraction/distraction.htm . After his jaw is fixed and his cleft palate is corrected...the trache comes OUT! That is the light at the end of the tunnel. I can't WAIT till he can talk and eat.
So now that I have rambled on and your eyes are watering from exhaustion...I just wanted to kind of give you a summary of how our journey began. I hope you enjoy hearing about our day to day adventures...big or small, good or bad. I hope Aiden touches your heart as much as he has touched ours. And please forgive my terrible writing! It was never my strong point. Enjoy....