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Adding Siblings to a Family with A Deletion Diagnosis

The Decision

Olivia was our firstborn.  I know that each family has different scenarios in which their affected child may be firstborn, the only child, or somewhere in the sibling hierarchy, and the introduction of a child with a genetic deletion affects each family differently.


When Olivia was born, I was naive and had thought I’d have 1 or 2 children and have a small happy family.  The introduction of Olivia into Aaron and my life took away all previous plans.  Suddenly I was living minute to minute and the thought of any more children other than Olivia was completely out of the picture.  The first 2 years of Olivia’s life were focused on figuring out how to identify and manage all of her symptoms - it was all-encompassing.  I did not think about research or other families or additional children.  Once the dust settled and things began to ‘stabilize’ (and I use that term loosely) I began to try to find more information about Wolf Hirschhorn and the research being done.  I didn’t find much and therefore decided to begin the Liv4TheCure journey.  At the same time, Aaron and I very cautiously spoke to each other about the possibility of having a sibling for Olivia but the idea was terrifying after what we had been through.  Part of our discovery journey for Liv4TheCure was getting in touch with and meeting Dr. Kurt Hirschhorn. At the time he was still working at Mount Sinai in New York City and we decided to take Olivia to meet him.  We had heard all kinds of stories about him not caring about the kids and speaking in a harsh tone to parents, but we wanted to meet him for ourselves and make our judgments.





Dr. Hirschhorn was wonderful.  He met Olivia and instantly took her, examined her and started to state all the positive things he saw and what he thought her development path would be. I’ll never forget one of the first questions he asked us, “Are you going to have more children?”  Aaron and I were caught off guard at his question and honestly, I think we were frightened to answer at the time.  He said that one of the best things we could do for her was give Olivia a sibling and that her development would be better with her siblings as role models. It was a defining moment in our life.  We left that visit and had a new perspective on giving Olivia a sibling. We went on to have Jack (1 year later) and then Isabelle (5 years later).  Just a note, we did do genetic testing on ourselves before making the decision to move forward with more children.


Jack


Jack has experienced more of the bad side of Olivia’s syndrome.  They are only 2 years apart and when Jack was 2 Olivia was still having seizures.  He would see Olivia seize and Mom and Dad taking care of her until the ambulance came.  Spending time in the hospital with Olivia was not uncommon and Jack spent a week and a half in a Boston hotel while Olivia had open heart surgery. Because of Olivia’s presence, Jack has had very unique experiences.  In our family, ‘drinking from syringes’ is not uncommon, taking trips to new cities (because of doctors/hospitals) isn’t uncommon either, and watching the iPad shows with Olivia was a way to bond with his sister.



Isabelle


Isabelle’s experience has been a little different than Jack’s.  By the time Isabelle was born, Olivia was no longer having seizures and our lives had stabilized a bit in the sense of our monthly trips to the hospital.  During Isabelle’s life, we experienced COVID and isolation - Olivia learning from home on a computer (nightmare) and the introduction to Vassar, Olivia’s service dog into our lives.


The Family Effect


Our kids have a sense of empathy and understanding of Olivia and other children like her that there is no way they could understand without having her as their sister.  While our family experiences have been ‘different’ and not always easy, they are unique and rewarding.  Olivia loves her brother and sister.  You can see it in the way she looks at them.  She watches them and learns from them. In some ways, she wants to be like them which pushes her to work harder to do certain things that possibly otherwise she wouldn’t do.   


Other families with children that have similar issues as Olivia’s have asked Aaron and me countless times about our perspective on having additional children.  While it may not be the right decision for every family, I can say 1000% that we did the right thing in having more children after Olivia and that our entire family's lives (Aaron,  I, Olivia, and Olivia’s siblings) are and will be better for it.





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