Brooklyn

Age: 9 years old

Duplication: 46,XX,rec(4)dup(4p)inv(4)(p12q35)

Lives in: Idaho, USA

One thing I have learned over the years is that doctors are smart, but the statistics they tell you....are usually a guessing game.  I was told after I had Stetson (my oldest son that has Trisomy 4p) and knowing that my nephew had Trisomy 4p also, that my chances of having another child with 4p were maybe 10% and that it was more common in boys! Fast forward to my 3rd pregnancy (I miscarried one in between my oldest with 4p and my 3rd pregnancy-the doctors figured that baby would have had 4p also, just more severe and non viable) we were at the ultrasound and I think I held my breath the entire time waiting to find out the sex of the baby.  When they told me it was a girl I had a calm come over me and thought, they told me it was more common in boys, I am having a girl we are golden she will be just fine.  I started dreaming about the future with my daughter. I pictured her first date, prom, her big wedding day and even the day when I could help her with her own babies....all the things moms and daughters do together.   

Friday, June 24th, 2005 all those dreams now became uncertain, our entire present and future with our daughter became uncertain.  At 3:18 pm that day a very blue and lifeless 4 lb 13 oz 18 in long baby girl made her grand entrance (exactly the same weight and length as Stetson).  After some frantic and quick work from the hospital staff, but what seemed like an eternity, we finally heard her scream.  As soon as they handed her to me I knew those doctors that told me my chances were so minimal....we WRONG! Brooklyn Janeil was a spitting image of her brother, from the cry to the curled fingers. But, she was beautiful with tons of thick dark hair, that little "4p nose", beautiful lips and blue eyes.  She stole our hearts and we all fell instantly in love with her.

As we tried to settle into our new life with 2 special needs kids, it was just like a repeat of 2 1/2 years prior.  This time though, I skipped the middle man doctor right off the bat, I called the geneticist first thing and he ordered the tests for me over the phone and we had her diagnosis before she was two months old.  We saw the same eye doctor and received the exact same diagnosis as we did with Stetson, as well as with the endocrinologist.  Although there always seemed to be a little something different about Brooklyn, we went in for an MRI and learned that Brooklyn had ACC (Agenesis of the Corpus Collasum) she was missing the middle membrane of her brain that helps the two hemispheres communicate with each other. She also had severe reflux to the point that she underwent a surgical procedure (fundoplication) to stop the constant emesis. Brooklyn also has a pretty severe degree of scoliosis which she wears a corrective brace for.

Both kids go to the same therapies, take the same medications, see the same doctors and go to the same school.  This was our new normal.  Yet after having Brooklyn I found myself bitter and mad, crying a lot, becoming withdrawn from anything social.   How could this RARE disorder happen to me and my kids twice? That wasn't supposed to happen.....and not to my little girl.  Of course Brooklyn doesn't know that she is any different, we have high expectations of her and involve her in whatever she desires.   

  

She is in dance with a group of typical peers, they love being her special helper and even though she finds a favorite move and usually does it the entire time...she does it, she performs, she competes and she LOVES to dance.  During that time she is brace free, care free and on cloud nine.  She is funny, sassy, spunky and 98% of the time happy. She also has a passion for coloring and paper. Give her some paper and crayons and she'll be happy for hours.  

I am beginning to think too that she is part fish, she loves to be in the water, whether it's a hose and sprinkler or a pool, she would live in it if she were allowed, or at least be in a swimsuit 24/7.  She makes friends wherever she goes and can talk anyone into doing anything for her.  She has a typical brother sister love/hate relationship with Stetson, and has loved becoming a big sister to Jett. Her crooked little run, gappy smile and freckle filled face brighten my day.  Even with the feelings I have had since having  her, I cannot imagine our life without her in it.  She is our ray of sunshine every day.

                 

We have been blessed to have met some other 4p families. It was amazing getting meet each and every one of them, and we are looking forward to a gathering this summer to get to meet even more.