Brooke’s Story

       Brooke is my fourth child, I was supposed to breeze through my pregnancy and bring home a baby what would be like any other baby, well, hopefully not Jack-he was colicky for eight weeks, ugh!  But my world was rocked when, at 21 weeks pregnant, a complete AV Canal heart defect was found and Down Syndrome was then thrown in as a very strong probability.  Shocked, Eric and I had no idea what to do…the maternal fetal specialist suggested termination, stating that DS along with the heart defect meant the our baby would never have a normal life.  We were also originally told that the surgeon could never fix her heart, at best she’d have a two chamber heart, and thus, a sub-par life.  Confused and saddened, we had an amnio done and scheduled a visit to the perinatal cardiologist before making the decision whether or not to terminate.
       The days between seeing the maternal fetal specialist and seeing the cardiologist are a fog.  I barely ate, I couldn’t care for my children, I couldn’t sleep.  All I did was sit and break into hysterics whenever I thought about terminating the baby I could feel moving inside of me.  But how could I birth a baby that wouldn’t survive?  How could I put my other children through that experience?  But how could a terminate a baby that was part of me?  It was truly the most awful week of life…and the guilt at what we almost did still lingers with me.
       Seeing the cardiologist was one of the best decisions Eric and I have ever made.  He assured us Brooke’s heart could be fixed, of course it’s major surgery, but not impossible, and if the amnio came back positive for DS it made no difference as far as her heart was concerned.  With tears streaming down my face we left the office with new hope, maybe we could do this…
       A few days after we met with the cardiologist we got the news that Brooke did have Down Syndrome.  I was okay with this news, I had done my grieving the weeks prior, but now it was Eric’s turn.  He wasn’t sure we could raise her properly, he didn’t know what effect a special needs child would have on our family.  Eric wanted to look into adoption.  I didn’t agree, but told him to go ahead and research.  After days of reading about adoption of children of Down Syndrome and learning that the waiting list could be years before a family gets a child, he wondered why did everyone want a baby with DS?  Because these children are amazing, these children are loving, these children deserve a chance.  Eric then researched stories about people with DS and the lives they lead and became hopeful, he wanted to keep Brooke.  Eric knew Brooke would amaze us…
        Brooke came into the world on January 20, 2010 weighing a hefty 9 lbs 6 oz! After a stay in the NICU for seven days she came home with me.  We had to visit the cardiologist every few weeks until her surgery came, but we were lucky…Brooke never went into heart failure, never needed medication prior, never needed a feeding tube.  She was alert and active, and the most amazing blessing I have ever received (apart from my other kids, of course!).
        Brooke’s open heart surgery was May 24, 2010, and we were in the hospital ten long days, days where I thought I was going to lose my mind!  Cardiovascularly, she did great after the first couple of days, but anything else that could of happened did, causing us to be in longer.  There was a 10% chance of kidney problems which may delay departure, check!  A 10% of platelet abnormalities, check!  It was a nightmare…Brooke was so crabby from being stuck in her hospital bed it made me miserable too.  But we made it through, and Brooke is doing great, no more meds, and she is growing and getting stronger every day…
       I’m not going to lie and say the Down Syndrome is never on my mind and I don’t worry about Brooke, because I do.  Some days when I see “typical” children hitting milestones on time it’s a punch in the stomach, but then I remember Brooke will do it too, just on her own schedule.  For the rest of my life I’ll have to fight for Brooke and what she needs, I’ll have to prove what her abilities are, but don’t we do that for our other children anyway?  It’s just a different kind of fight for Brooke…and she’s worth it…she’s going to set the world on fire…
       So if you just found our your baby has Down Syndrome and/or a heart defect, please know it’s not the end of the world.  I know it’s hard to accept, it can be devastating, it’s not what was expected, but that doesn’t make your child any less perfect.

       Brooke is just another member of our family, and our goal for her is to have a happy, productive life…just like any other person…because Brooke is more alike than different..