Eva-Simone is our fourth child. We did not know she had Trisomy 13 in utero. Eva was born during the fall of 2008 in Virginia. We did know she had complications due to abnormal ultrasounds however we had not had prenatal screening tests while we were pregnant to figure out exactly what condition she had. For our family, the end result would be the same so there seemed no need to have them done. We would love her and care for her as we did our older 3. I believe it was a blessing in disguise that we did not know early on. Additional stress during an already stressful pregnancy was unnecessary for our family.
The moment after I gave birth to Eva I waited, for what seemed like forever, before I heard her cry. Once I did hear her cry I had this feeling rush over me that everything would be ok. Apparently, I was the only one having that feeling. The doctors were in emergency mode…they saw her low set/malformed ears, cleft palate, small right eye and extra digit. The craziness that would become our new “normal” began. I gave Eva a quick kiss and she was rushed out of our room to the NICU.
We stayed in the NICU with her for 7 days exactly. On the 7th day we had confirmation of what the doctors dreaded, a Full Trisomy 13 diagnosis. We were told that “we would be lucky to have 2 weeks with her”. My husband, Sean and I decided that if we would only have such a limited time with Eva we would like to enjoy these moments at home with her rather than in the hospital. The NICU staff taught us how to care for her. They taught us CPR, how to feed her through her NG tube and how to measure and place her NG tube. We were sent home with a few contact numbers- Genetics in DC, SSI and a DME company.
Life at home was more comfortable than the NICU but it was exhausting. Sean and I took turns caring for Eva and watching her sleep. We were told children with Trisomy 13 have apnea and would eventually stop breathing. The first 4 months of Eva’s life were the most difficult. She was in pain because she had a very sensitive GI tract. After 2 months, due to stress, I didn’t produce enough breast milk for Eva. We began formula but she was not reacting well to the change.
Our families lived out of state, so we did not have a local support system. We, also, did not qualify for Medicaid through SSI. Finally, we learned about the Medicaid Waiver. At 4 months we were able to have nursing help for 8 hours a day and 8 hours at night through the Med Waiver Program. At 6 months old Eva had Nissen surgery to help with GERD, hernia corrected and a g-tube placed. After surgery she had a few really bad seizures. They performed an EEG to formally diagnose her with seizures. We’d witnessed seizure activity since birth but were not able to confirm it with the 4 hour EEG given previously.
Physically life became easier for Eva as she grew. Our older 3 children loved having Eva home. Dayzha, our oldest, quickly took to wanting to love on Eva but also understand the science behind her medical challenges. Savon and Alani enjoyed having a little one to cuddle with. She quickly became the heart of our family. We had to learn Eva’s medical needs to give her a better quality of life. Much of the first year of her life was full of researching the best combination of supportive doctors, nursing help, medicines, therapies and diet for her sensitive and unique body.
Much of Eva’s care has depended on the help of our Complex Care Doctor (pediatrician for complex children). Our Complex Care doctor helped set our family up with doctors who were willing to look past Eva’s Trisomy 13 diagnosis. It’s very important to our family that we have doctors and other professionals in Eva’s life that understand we make decisions together as a team. The best experiences with professionals helping us with Eva have been situations when we are able to ask many questions and were given full information about what options were available for Eva. At times we needed to get creative with treatments for her because her body reacted differently than most and/or she had limitations (such as surgery being only a last resort). Professionals that took time to learn about Eva and our family as a whole made the biggest impact on Eva’s overall health and wellbeing.
Dr. Duss demonstrated these qualities from the very first appointment and every appointment thereafter. We appreciate her patience and loving caring attitude towards Eva. She understood Eva would have a unique path in her medical care and was happy to support her with what she needed at Eva’s pace.
Eva was complex medically and otherwise. She took the term complex to another level that many didn’t know existed. She challenged those who feel they have seen it all. Without a word Eva demanded patience, greatness and respect from all who met her. As the years went on, we no longer needed to worry as much that doctors wouldn’t see past her Trisomy diagnosis. Challenges in advocating for Eva as she became older were within school system and medical insurance/medical needs. There is a very fine line between medically necessary and educationally relevant. We have a wonderful team of educators that worked with Eva for 6 years. As they saw needs arise they were happy to advocate for and with us to ensure Eva had what she needed to learn and grow. Finding a team we trusted was the most important thing did for Eva. The professionals that worked with Eva understood and supported our goals for her. When we needed to add a new professional to our team, Eva’s current team members would usually recommend someone who they knew would work well with Eva and our family. This assistance led to a smooth transition when tackling a new challenge/need in Eva’s life.
Eva had many challenges daily. She had her own timeline of when she would do things… everything from getting over a cold to learning how to sit up. We quickly learned we would all have to work on Eva’s schedule. She was a princess and we just lived in her world. We have always been happy to live in her world and follow her lead.
It’s difficult to condense her 9 years of life to share with others. We have learned so much along the way. Most importantly we have learned to slow down. Eva has taught us every moment is a gift. We learned to treasure simple moments such as waking up in the morning; seeing the sun shine through the windows cause awesome shadows. She enjoyed small things like that often. When she was happy, we were are ALL happy. We could be having a stressful day but if Eva smiled… we stop, look at her, smile with her and enjoy that beautiful moment.
Eva gave love and enjoyed life’s beauty by being present in it. She saw the contrast between the sky and the trees. She smiled. She listened to our voice and acknowledged our presence by pausing. Her subtleties were so important and meaningful. She fulfilled the type of life we all strive to have… a happy life full of love, appreciation and beauty.
We also learned our capacity to absorb new lessons is endless. Never in a million years would I have thought I would be able to understand so many medical terms, conditions and how they can affect someone. I never would have thought I would have to preform CPR correctly to save Eva’s life. I would have never expected that our experiences would give us the opportunity to help families locally and globally. Eva has made all these things happen. She showed me how to be a better version of myself and how to continue to better myself through education, patience and perseverance.
Our journey with Eva led our family to manage a non-profit organization for 5 years, Eva’s Gift. We named Eva’s Gift in her honor. Eva taught our family as a whole to be more giving and compassionate. Eva’s Gift supported families with children who have special needs locally and online as well as raised awareness for Trisomy.
Online support has also been a key component in our journey. I have met wonderful parents who have taught our family a lot through the years. We support each other’s journey through sharing our experiences, educating each other and celebrating milestones that only another parent of a child with complex special needs can appreciate.
Every child deserves a chance at life. Eva’s life had purpose that may not seem obvious to some but has indirectly made amazing positive changes in our family and our community. We become better people when we learn to humble ourselves and become the student to a child like Eva. They have the ability to see life through an innocent lens, non-biased and full of appreciation.
Mom of 4 Amazing Children
Advocate for Children with Trisomy and other Special Needs