Ella Marohn

Ella’s Story

“Ella continues to be a big part of our lives.”

Ella Marohn, Trisomy 18, Downer’s Grove, IL, 7/31/2002 – 8/13/2007

Our daughter Ella was born on July 31, 2002.  She was our first child and our 20 week ultrasound conducted in a Dr.’s office (since moved out of the office) provided no indication that something could be awry.  Our first indication came from the Neonatologist as he informed us that she had some markers that he wanted to investigate further.   What was supposed to be one of the happiest days of our lives, suddenly took a different path, filled with apprehension, hundreds of questions and entry into the Trisomy 18 “club”.

After 5 days, we took Ella home at 3 1/2 pounds as she continued to beat the doctor’s expectations.  We did have very supportive doctors that tried to be as informative as possible, but also were realistic in the odds that faced our little girl.   At home, we tried to experience as much of Ella’s life in the days that we were blessed to have her.  One occasion consisted of an overnight stay in Chicago where she was our dinner table’s centerpiece,  where the entire restaurant staff sang Happy Birthday (it was her 6 week birthday).  We continued to be cautiously optimistic as we celebrated her weekly birthdays, but still grounded in the fact that we were hoping not for a cure, but as much time as possible with her.

The weekly birthdays soon gave away to monthly birthdays as Ella turned one (and our waistlines continued to grow with weekly cakes).  We all just looked at one another and relished the presence of our little girl.  Ella was born with several heart defects, the most sever being a large VSD.  Even as curve balls were thrown our way (developing primary pulmonary hypertension, difficulty in getting pounds on her) we still knew how precious Ella was to still be our lives and we shared her with anyone that wanted to take notice.  A phrase we quickly learned to describe our situation was, “It’s Ella” when doctor’s looked at us with a “don’t have a clue what will happen next” look.  However, even if we didn’t know what to expect, we and Ella’s doctors agreed that we would do what we needed for her to enjoy life to the fullest for as long as she was here with us.  One of the more daunting days was her first day of school as we raced after the bus like crazy paparazzi stalking a celebrity.  She loved school and while she couldn’t talk to tell us, her mood definitely darkened when she was on breaks from school.

While Ella couldn’t “talk” she could convey a lot with her actions – especially her eyes.  An example was how she stared daggers at her new brother when he came home three years later.  Ella was hard of hearing, but she somehow still had the ability to cry at a moment’s notice when our son decided it was time to alert us to feeding time or when he had too much fun in her bath (how dare he)!  One of the best experiences out of having another child was for her to show emotion, even if it was jealousy and not really being able to tolerate her brother (take that Mr. Geneticist who said she wouldn’t amount to anything but a blob of unsmiling flesh)!!

After five years of working continuously with a nutritionist and our GI doctor, we decided that we need to get a G-tube as Ella was starting to lose weight (she did have a sucking reflex from the first few days onward, so we had the extra blessing of being able to bottle feed  – although we did create a little monster as it had to be precisely the right temperature or she wouldn’t take it – talk about logistical nightmares on road trips).  As Ella came out of the successful operation, we quickly were reminded of her fragility as her numbers dropped and she needed to be put on a vent.  However, true to Ella, she fought her way off the vent and we looked forward to our new chapter.  The day we were dressing her to take her home, she had another attack (seizure or heart) and she decided that her fight was over.  She came into the world on her terms and left it as well.  She passed away just 13 days past her 5th birthday.

After nearly five years from her passing (and another son – yes, life does go on),  Ella continues to be a big part of our lives.  The boys kiss her good night each evening and we talk freely to those that want to understand what Ella was all about.  Ella was too precious not to share while on earth, but also continue to enrich people’s lives still today with talks at hospitals and Northwestern’s genetic counseling master’s program on Ella and Trisomy 18.  We still have a long way to go in educating people, especially the medical community, that while our children’s lives may not be “normal”, they are still our children and probably end up providing more benefits in their short lives than a lot of other people do in an entire lifetime.

Happy 10th birthday Ella, we love you.  While we miss you terribly, we are reminded of your gift to us on a daily basis and couldn’t be prouder parents!