Ren’s Memorial Fund was created to honor the memory of our son Ren.
Ren was born on March 5, 2014. Prenatally he was diagnosed with Down syndrome and a congenital heart defect which meant he needed immediate medical intervention after birth. He was taken to the NICU and underwent his first open heart surgery at 2 weeks old. Ren spent his first three months at UVA Medical Center while struggling to recover from his heart surgery. One night in May we almost lost him to a staph infection but miraculously he pulled through and was able to come home in June. Our cute red-head was quite the fighter!
While we were excited to bring him home, we never would have survived without the support of pediatric palliative and hospice care. (Learn more about these services below.) Our hospice nurse actually met us at our house the night we brought Ren home and helped us set-up all his machines and measure out his medications. We were blessed to have Ren home for the summer months.
While Ren qualified for 16 hours a day of home nursing care, there were no pediatric nurses available in our area. Thankfully, I was already a stay-at-home mom for our first son, so I was able to take care of Ren’s complex medical needs. Our two-year-old son Reid lived with his grandparents for a majority of this time because I couldn’t handle them both while my husband, Robert, was at work, but he spent the evenings and weekends with us. During this time, we were able to do “normal” family things like take walks together, go out to eat or just enjoy spending time as a family at home. After two months on our own, we were excited to finally find a home health nurse for 32 hours a week during Ren’s last month at home.
While I will forever be thankful for this time we had as a family, it was also a stressful time because Ren was in such critical condition. Family and friends pitched in to help watch Reid, fix us meals and visit us since going out was a challenge. A few friends even accompanied me to Ren’s weekly doctor’s appointments until we got our home health nurse. Many offered financial support which was tremendously helpful with all we had going on. We continue to be amazed at how many people supported us with their prayers!
Since Ren was making progress, we decided to look into options for his second heart surgery which would need to be done when he was six months old. We decided to take him to Children’s National Medical Center in Washington D.C. for this surgery. While there, our family was separated while I lived at the Ronald McDonald House, Robert worked and visited as much as possible and Reid continued to live with his grandparents.
Sadly, the second heart surgery was too much for Ren. After weeks on ECMO life support, dialysis and a ventilator, Ren and his little heart were tired of fighting. He passed away on his 7 month birthday, October 5, 2014. While we were devastated to lose him, we are thankful he is in heaven where he is suffering no more. We take comfort knowing God will watch over him until we can see him again one day. Our faith carried us through this time with Ren and continues to support us on our grief journey. While we do not understand why this was Ren’s story, we choose to focus on the blessing of those seven months we had together as a family and the legacy Ren left behind.
Ren’s Legacy
Part of Ren’s legacy is to continue to support families of seriously ill children. We have a firsthand understanding of the challenges of having a seriously ill child both in the hospital and at home. Each situation has its unique stresses and many families find themselves moving in between the two places. Having a child in the hospital is obviously hard because the family is separated, usually having to choose which adult will stay at the hospital and which adult will take care of things at home. The hospital environment, especially the ICU (Intensive Care Unit), can often be described as a roller coaster because the situation can change from stable to critical and back again in minutes. As you can imagine, this is hard on both the family sitting in the hospital room and those getting the ever-changing news second-hand.
For our family, having Ren home was equally as stressful because we were now the “experts” in charge of his complex care. We literally had to carry a card in our wallets saying “this infant is at risk for sudden death” in the event that we would need to take him to the ER and make the staff aware of his condition. The doctors told us that he could go into cardiac arrest at any moment and there might not be anything we could do because of the condition of his heart.
Ren had a feeding tube, was on supplemental oxygen and had to be given daily injections. He took medications several times a day that came from numerous different pharmacies. He had to wear a pulse oximeter monitor (for heart rate and oxygen) at night which constantly alarmed simply because he moved around. We share these details not to complain, but to describe the reality of our situation. Every family is different but we want to bring light to the challenges the family of a seriously ill child can face.
This is why another part of Ren’s legacy is raising awareness of Pediatric Palliative and Hospice Care.
Pediatric Palliative and Hospice Care
Through our experience, we realized many people are unaware or have misconceptions about pediatric palliative and pediatric hospice care (which is different from adult hospice care).
Palliative care is an extra layer of support for families facing life-threatening or life-limiting illnesses with a focus on providing relief from the symptoms, pain, and stress of the patient’s illness. What really impressed us was that palliative care’s main goal is to improve quality of life for both the child and the family.
Our local hospice was able to provide concurrent care along with hospice care which meant we could benefit from hospice services while still pursing treatment options for Ren. (Members of the hospice staff make regular home visits, usually lasting an hour or two, in order to assess the patient and help manage their pain and symptoms. They also provide emotional support to the patient and family along with many other services. This is different from home health nurses who provide private duty nursing care which focuses on routine preventative health. They usually work scheduled shifts.)
Our hope is that families of seriously ill children can feel support no matter what care path they choose. Ren’s Memorial Fund is used to help these families. We think the financial gift will help a little but we hope knowing another family is thinking of them makes a bigger difference for the families we help.
~Mary Beth Hill, Ren’s mom
~Robert Hill, Ren’s dad
~Reid, Ren’s big brother
Feel free to contact us at if you would like to learn more.
For more information on palliative and hospice care: http://getpalliativecare.org/whatis/pediatric/ OR http://www.nhpco.org/pediatric
Ren's Legacy 