On January 20, 2005 our daughter, Jade Valencia Day, was born at 36 weeks by emergency c-section after her heart rate started taking major decelerations. She weighed only 3 lbs., 4 oz. and spent 39 days in the hospital (first NICU, then Special Care Nursery).
The day before our daughter was born, I was admitted to the hospital for induction right after a routine doctor’s visit during which ultrasound showed decreased amniotic fluid. Prior to that, my pregnancy/doctor’s visits had gone fairly smoothly with the only concern being possible IUGR, and my husband and I were told repeatedly that everything was fine.
We did not get Jade’s diagnosis (full Trisomy 18 including VSD and cleft palate) until almost a week after she was born and so up until then we thought that she was going to be okay. The news was excruciatingly devastating to say the least, but we already knew that we didn’t want our baby to suffer. After the initial shock and disbelief wore off a bit, we decided that she would have a “DNR” status and the focus was to keep her comfortable. In learning more about her condition/prognosis and understanding that having Trisomy 18 meant that ultimately our baby would die, our wish for her was to have a more natural death without painful or invasive medical procedures.
As we tried desperately to make sense of it all, our minds were in a million places. When we first got the news, because of our daughter’s short life expectancy, I was afraid to love her thinking at the time that not loving her would somehow mean it would not hurt as much if we lost her. But through God’s grace, love prevailed over fear and we chose to love Jade without limits each and every day.
Initially, no one really expected that our daughter would thrive, do a lot of the “normal” baby things and/or ever be well enough to come home from the hospital, but she did and seemed to be improving. She was home with us (under hospice care) for about a week before she started becoming apneic/showing signs of heart failure. We took her to the hospice inpatient facility where she received the medical attention and we got the help needed to care for her at that time. We brought her home from the hospice inpatient facility and enjoyed five more days with her being home again.
Jade had another episode of apnea/heart failure. She had to go back to the inpatient facility where two days later, March 26 2005, she gently passed away in her daddy’s arms with a smile on her face shortly after we arrived there to be with her. She had just started to drink more of her formula from a bottle (along with nasogastric tube feedings) and even hold her head up. Jade truly was our little miracle baby, and we never knew what she and God were going to decide for her to do next. We often watched and listened in amazement as we saw and heard how she left a lasting impression on everyone she came in contact with.
Congratulatory messages from friends and family suddenly turned into condolences. Grief reared its ugly head and gradually became a twofold process: once when we grieved for the “normal” child we expected but did not have and again when we lost her.
While we miss our little “sweet pea” terribly, we find comfort in knowing that she did not suffer, and she’s definitely now in a better place. As my husband would often say, Jade was “too perfect for this world” so we’re glad that she no longer has to fight to stay in it. I believe that every child diagnosed with Trisomy 18 or a similar condition is also “too perfect for this world.”
Though brief as it was, we are very grateful for the time we had with Jade and for the many, wonderful people she’s brought into our lives. Despite the continual sadness, we are actually better people now than we would have been had we not experienced this. We look forward to meeting our daughter again in heaven, and we know that she’s a little Guardian Angel looking down on us until then.
My husband and I would like to say thank you from the bottom of our hearts to everyone involved with the Trisomy 18 Foundation for their time, compassion and support. Through people like them who continually exemplify God’s love and mercy, we do have the peace and comfort that pass all understanding (and other families do/can too).