What is something unique and special about your child with trisomy that you wish more people knew?
Leila is truly a gift from God and such a blessing to us. She has overcome so many obstacles in her life. I wish more people understood how strong and resilient our kids can be. Each child is different and has their own unique challenges, but many can and do thrive, especially with the right medical team to help.

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?
Children with trisomy are the “lucky few” that are born a little extra special. We were blessed with Leila 13 years ago and this past year we were blessed with a handsome 6 year old “bonus” child with trisomy 21 (Down Syndrome) that we adopted through foster care. Raising awareness for these beautiful children is imperative. Their lives matter. They are worth fighting for. They are the kindest, most loving kids. They are a gift that will change your life for the better!

Others can make a difference by being kind, educating themselves and others about children with disabilities and supporting families that have higher needs children. The journey isn’t always an easy one, but it’s one that I am so thankful for.

I would like to see Simon’s Law passed in all states. Our children should not have death sentences placed on them before birth. Doctor’s need to do more to stabilize and treat our children. Don’t write them off because of the underlying diagnosis… treat the symptoms!

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?
Leila’s Story:

When we found out that I was pregnant with our 4th child, we were shocked! It was unexpected, but welcomed. The pregnancy progressed nicely with my normal morning sickness, but nothing alarming. We went to a private 3D/4D ultrasound place to find out the gender at 16 weeks so we could get the room done before we went back to school as teachers. On September 21, 2011 we went in for our “big” ultrasound. We knew by what the technician wasn’t saying, that something was wrong. We found out that our little girl had bilateral club feet, clenched hands, a single umbilical artery, choroid plexus cysts, a significant heart defect and a small jaw. We had no idea what this meant, but we knew they were “markers” for chromosomal anomalies.

The following morning, James received a call from my obstetrician that he wanted us in immediately for an amnio and told him that my life could be at risk. We had always refused genetic testing up until this point and it made us very uncomfortable to do it, as it wouldn’t change our minds. After a lot of persuasion, we cautiously went ahead with the amnio. The FISH test came back the following Monday, Trisomy 18. It was such a challenging diagnosis to swallow and comprehend.

We were given 2 options; the first option was “early induction” (their fancy word for termination or abortion), the second was to carry as long as we were able, but the “fetus” would not make it to birth and it certainly wouldn’t be a live birth. An abortion was not an option for us and we made the decision to carry, for as long as God allowed.

Trisomy 18 or Edwards Syndrome is a chromosomal disorder where the child has 3 copies of the 18th chromosome, instead of the usual 2 in every cell of the body. At the time, this condition was considered “not compatible with life” by medical standards. With a heavy social media presence, we are very slowly changing that label.

We decided to seek out a 2nd opinion and went to a larger hospital for a more detailed scan. They told me that they had never sent a child home with Trisomy 18 that had lived for more than 1 day. We called 2 other hospitals and we were told that I should be happy that my doctor was even allowing us to continue the pregnancy with me having gestational diabetes. My polyhydramnios was significant, so we prepared for the “what if something happened, because of our choice to carry.” My previous husband had passed away, so we made sure Braeden was legally adopted by James and we had plans in place, just in case.

I continued to see my OB, but he treated me and not Leila (aka fetus). We asked about having a c-section to reduce the stress on her and was told that it was too risky for me and their goal was to protect me. We met with perinatal hospice and created our birth plan. We also met with our pastor to plan her funeral and contacted the local funeral home.

When Leila made it to 34 weeks in utero, we decided that we wanted to change from comfort care to full intervention. Little did we know the challenges we would face by choosing to do so. We were told that she was “not compatible with life” and no life saving, heroic acts would be done. We were then told that our insurance wouldn’t even cover the NICU and would we want her to die without being able to spend time with her? We knew time was running out. We had heard of a Trisomy 18 child being born at a different hospital that did live for a month! For us, a month was at least time. I called the NICU there and spoke directly with one of the neonatologists. The doctor there was willing to support our wishes, including intubation if needed. We then tried one of the OB’s that was recommended. The OB had a cancellation for the following Tuesday (4 days away)! We felt strongly that this was God’s perfect timing.

We celebrated Christmas and prepared as much as we could to meet our new OB. We were amazed with how supportive she was of our decisions. She asked us if we had a fetal echocardiogram and non-stress tests done yet. No. Had we met with a perinatologist? No.

Since I was now 34-½ weeks, time was running out. She asked us to come back the next day when the cardiologist was there to do a fetal echo and non-stress test. The following day during the tests, Leila was already starting to fail. We were told that if we wanted any chance of seeing her alive, that I would have to go immediately to Labor and Delivery. After 2 failed spinals, Leila Hope was born at 34 weeks 6 days weighing 4 lbs 12 oz. She was intubated and taken to the NICU. At 4 weeks of age we requested a transfer to the Children’s Hospital for an ENT consult and to have a G-tube placed. Once transferred to CHW, we were met by a very unsupportive neonatologist who could not understand why we would even consider doing surgery on a child like this. He told us, “take her home and let her die”. When we refused and I forbade him from turning down her high flow support that was keeping her airway open, we found ourselves having to defend our decisions to the ethics board of the hospital.

The ethics board did agree to have the hospital treat her if it would improve her “quality of life.” In her first 9 months, she received her g-tube, trach, tenotomy and much needed heart repair for tetralogy of fallot. The first year was challenging, but it has gotten easier. Leila is now 12 years old and brings our family so much joy. Her siblings are more compassionate because of her and she has made our marriage stronger, despite being told that she would ruin our marriage.

We are very proud to say that by the Grace of God, Leila will become a teenager at the end of this year! After the age of 1, she was considered a long term survivor, but now we are looking ahead to teenage years! She is proving to the medical community that she is indeed compatible with life by living and thriving with full trisomy 18. Our little girl that was going to “live in the hospital without any quality of life” has not been inpatient for sickness in a few years (we know that can quickly change at any point).

Why did we decide to carry after a “fatal” diagnosis? We trusted His plan for us and her. No matter the amount of time, we knew she was ours and was a gift. Even those that have lost their children are thankful for that time and proper good-byes. For those that are new to this journey, please don’t give up hope, trust HIS plan. Only He knows the number of days or one’s purpose in life.