When our daughter Kira was diagnosed with Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD) syndrome in 2009, we knew that there was a chance she would not live to see adulthood. The syndrome is extremely rare and there is very little information about it. We were fortunate to have some great care, which gave her some good, quality years. However, we knew the odds weren’t great, and we knew that there was a strong possibility that she was not get to grow up.
After a few years of good health, despite her diagnosis, things began to deteriorate. In December 2012, we made the difficult decision to have her hospitalized for her own well-being. She had been suffering from depression and mental health issues, along with her regular health problems, something not uncommon for chronically ill children. She ended up spending the next, and last, six months of her life in the hospital.
Transitioning to Palliative Care
As we watched Kira’s health decline, both physically and mentally, we reached out for help and support. Her medical team was amazing, they listened to us, they shared with us, and they spoke truthfully with us. However, we also needed another team, one that nobody ever wants to have for their child – the palliative care team.
Her regular doctors had spent many days talking with us and giving us options; however, none of them were working. We had reached a point where our bright, vivacious, loving daughter was just falling further into a dark place, and it wasn’t fair to her. The palliative care team understood that quality of life is just as important as quantity of life. They took the time to listen to the medical team as we all decided that we could only try a plan one more time, and if things didn’t work, we would make the difficult decision to withdraw any further care.
We were fortunate to have a great palliative care team at our hospital. Dr. M and nurse K met with us often to discuss Kira’s decline and to make sure everyone’s wishes were being honored. Kira was able to express her own desire to give up after having exhausted most of the medical options available to us. Despite her young age, she was extremely bright and comprehended much more of her situation than most others, and she had truly begun to give up. Throughout it all, the team never made her, or us, feel bad for that decision. They listened to her feelings and took everything we said into consideration as we made decisions.
By having daily conversations with the palliative care team during calmer times, we were able to share our own concerns and develop an end-of-life plan. We talked about options related to any organ donations, which was something we wished to do. Unfortunately, because of how she passed away, there wasn’t an option to donate any organs. However, they explained to us that we would be able to donate tissue and her corneas because that process was done differently. That was truly a blessing for us, knowing that Kira could help others despite her own short life.
Making a decision to let your child go is without a doubt one of the hardest–if not THE hardest–thing a parent can ever go through. But, by using the palliative care team at the hospital, they made it just a bit easier. They gave us peace, and they made us feel completely supported as we said goodbye to our daughter. They were there for every step, and most importantly, for the very last one.
Nurse K spent time with our son, Kira’s twin brother Christian, and listened to his grief as we packed up the hospital room that had been Kira’s last home. And she was the last person to walk us to our car that night as we loaded up six months’ worth of belongings from our little girl who wasn’t coming home.
No parent ever expects to outlive his or her child. No parent ever wants to go through a lengthy, chronic illness. However, there are many parents and families who have gone through this experience. It is important for families to know that they are not alone in their struggle and grief. Parents need to reach out to those who can help them as they go through this difficult journey.