down syndrome

LAB : Whitney Summers Photography

Introducing Leila Adele Baddour born August 17 2012 at 11:39 pm / 6 lbs 4 ozs and 19″ long

Leila has Down syndrome. Thankfully we knew before she was born that she would be chromosomally enhanced and had plenty of time to educate and prepare ourselves for her awesomeness. Though we have some ideas, we don’t know what types of challenges and/or secret powers await us.  Two things I know for sure: she is the love of my life and she is awesome!

THE DIAGNOSIS

I was first alerted about a possible Down syndrome diagnosis at my first ultrasound where they detected a large nuchal fold and a missing nasal bone. I declined to have CVS testing or an amniocentesis. I wasn’t comfortable with the possibility of miscarriage and it wasn’t extremely important for me to know either way since I was not considering abortion. Eventually I was told about a new non-invasive blood test with a 98% accuracy rate called MaterniT21 (false positives can happen). My blood test results came back positive and I began doing research, meeting with geneticist, preparing family and connecting with groups and individuals for support. Though I cried at the news it was not because I mourned the loss of what I thought my child would be, it was because I feared the rest of the world. I immediately began to worry for my baby (and still do).

THE BRIGHT SIDE

There is a lot of fear-mongering out there when it comes to Down syndrome. Unfortunately the high risk pregnancy group I was referred to did not attempt to sell me on the idea of raising a child with Down syndrome. And at every appointment I was asked if I planned to continue my pregnancy. It was absolutely horrific and obviously more support, better education and positive information is needed. How else is a woman supposed to make an informed decision about the future of her child? Thankfully I fully believed that it was not going to be all doom and gloom and successfully delivered my daughter naturally with a midwife just as I had planned.

The most important thing I learned was that each person with Down syndrome is a unique individual and that recent advances in medicine, education and acceptance have greatly improved their lives.Becaue of that I know she will live a rich and rewarding life and will enrich mine as well (and boy has she!). I feel extremely positive and hopeful about our lives and have no limitations for my little girl.

LAB : Whitney Summers Photography

OUR FAVORITE RESOURCES

If you too have received a prenatal diagnosis of Down syndrome, please visit downysyndromepregnancy.org to download a very helpful free ebook. you can also find resources via the National Down Syndrome Society, National Down Syndrome Congress and the International Down Syndrome Coalition (the IDSC also has a great facebook page for babies-toddlers where parents and caretakers show off their beautiful kids and ask questions and get support). Here’s a great article to read: 9 Reasons Down Syndrome Won’t Ruin Your Life. And here are a few of my favorite videos: Dear Future Mom, Just Like You and The Journey Ahead: Consider the Possibilities. One of my favorite blogs to read is Enjoying the Small Things, detailing the lives of another family with a little girl named Nella who also has Down syndrome.

But more importantly: research on how to care for a baby, because before anything else your new bundle of joy is just that – a baby.

CHALLENGES

I realize that there may be challenges ahead of us but all children are challenging. There is no prenatal test that can tell you what kind of child you will have. My daughter is my daughter and that’s exactly how I treat her and she honestly brings me more joy than I ever thought possible.

Her birth was uneventful and dare I say – easy! Since then we’ve faced a few challenges typical to individuals with Down syndrome. She had open heart surgery at 9 months old to patch a few holes in her heart. She did great and bounced back so fast – it was amazing! She’s had her tonsils and adenoids out at a year old and requires the use of a cpap machine at night for sleep apnea. She’s been wearing glasses since she was a year old and she has to drink everything at honey consistency because she’s a silent aspirator. None of this has been earth shattering and is very managable.

LAB : Whitney Summers Photography

BEHIND THE NAME

Although we knew Leila would have Down syndrome we did not know she would be a she, some things have to remain a surprise! Leila is named after Joey’s sister, Susan Leila who passed away from lymphoma in 2006. Before Susan passed she told Joey to name a daughter after their favorite grandma, Adele. When he told me this before we were married I knew immediately that if were were to have a daughter she would be named, Leila Adele. And because I like interesting little details: Leila’s initials spell LAB and at the time we had a beloved yellow lab. Leila was born at night and Leila in Arabic means ‘night’ and our last name in Arabic means ‘full moon’. Leila’s full name has 17 characters and she was born on the 17th.

: photos by the very talented Whitney Summers