“I’ve always been drawn to the special needs population. I was involved in a program in my high school that trained intellectually delayed teenagers to work at a nearby plant so they would have a job when they graduated. When I moved to Mobile for college, I volunteered at St. Mary’s home. My parents believed in fostering and helping the less than. I grew up in a small town in an undiverse country area in north Alabama, but my parents gave me a bigger view of the world.
I became a respiratory therapist working in the neonatal intensive care unit, then went back to school for an accelerated nursing program. My mom and dad were group parents at a children’s home. My husband, Patrick, and I got our license to become foster parents because there was a little boy we wanted to get for holidays. We had known him for three years and DHR said that we could adopt him. The adoption fell through three days before we were supposed to move forward.
The agency had our information and called us off and on to be foster parents, but I was in school and it wasn’t the right time. They called us and said there is a baby in NICU that needs a place to stay for a couple of weeks. I was working in NICU that night and found the baby, Elijah. He was born 18 weeks premature and was horribly broken. He couldn’t see and had hydrocephalus. His mother couldn’t care for him, but I told Patrick we weren’t taking the baby. Elijah was going to be profoundly disabled and have cerebral palsy. He would never walk or talk. Patrick is adopted, but not medical, and wanted to come Elijah. I told Patrick if we bring this baby home, we’re going to keep him because that’s my personality. I can’t do something halfway and I don’t lose.
I took Elijah home the next day. I was 28 and in school. Patrick had never changed a diaper, and this kid was coming home on medicines and machines. God must have wanted us to be Elijah’s parents because we couldn’t even afford diapers. It was a hot mess. After we brought him home, we were told that his brain injury was very severe and he tested positive for several drugs. They said if he lived, it would be a profoundly disabled existence.
I was overwhelmed because I knew what his life was going to look like, but I didn’t know there was a chance he could die. I graduated from nursing school, but Elijah was my full-time job. He was a sick baby and the first year he had about 150 appointments. He was immunocompromised, so I wouldn’t let anybody come over, not even my parents. Patrick was often traveling for his job and I was alone for multiple surgeries. I spent so much time caring for Elijah that I lost myself and entered a dark place. I had anxiety over leaving him even long enough to take a shower. I felt I was keeping him alive, even though he was not critical at that point. I was being very dramatic. But in my head, that’s what I felt.
The doctors told me Elijah needed siblings and I had Henry and Lucy. It has been amazing to watch their special relationship with Elijah and their love for him. They are all food for each other.
When I went back to work in the NICU part-time as a nurse, I sought out the micro-preemie moms because I understood their journey and what happened after parents left the supportive cocoon of NICU. Often they are sent into the world with a baby they don’t know how to care for. I wanted to emotionally prepare them for what would come and provide the resources that would help them.
We created The Bridge program at USA Children and Women’s Hospital, and I started consulting before delivery with parents who had the most severe and fatal diagnosis. It went full speed from there. The hospital created a position for me as a parent educator. They let me figure my job out and provided what I needed.
I wandered blindly for a few weeks looking for the biggest needs. The NICU deals with high-risk pregnancies and babies with terminal conditions. There were rights that parents had that weren’t discussed, including the DNR order, do not resuscitate. But you had to have a good rapport with parents so they trust you and listen. Resuscitating a baby creates confusion and often parents were minimally educated on their options and the best or safest answers. Those deliveries weren’t peaceful. I felt like the parents were robbed from time and a different outcome if they had been educated differently. I want the parents to be as prepared as possible for this difficult time. The Bridge became a way to ensure that pregnant patients and their families are fully educated on their infant’s diagnosis and the associated risks, what a NICU stay entails, and if necessary, end-of-life plans.
We also check on moms and try to keep up their mental health. These moms are tired, overwhelmed and don’t feel supported. I can quickly read the room to get a temperature check of what’s happening and where we need to go. Some are in denial. I set short-term goals such as picking a provider so she gets consistent care. I focus on getting the mom through the pregnancy and caring for herself. We provide counseling if that is what she needs. We take manageable steps until we get to the hard stuff. You can’t just keep hammering the hard stuff over and over again, because either they don’t come back or they get really angry and shut down.
After I educate a family, I have to support their decision as long as it is legal and appropriate. I may not agree, but I will fight for them. It makes death and terminality easier to discuss when they feel like you are in the trenches with them. I help validate their grief. I use the term anticipatory grief. If I can get them talking prior to delivery, it will make what they are facing a little easier.
I never take hope away from a family. It’s their job to hope and to pray for a miracle. I’m praying for the same thing. But we must also have logical medical management. I work with kids through the age of 18. It is hard having these conversations with dying teenagers, but they need to feel ownership in what is happening to them. I don’t lie or sugarcoat the truth if they are dying. You live in fear when you aren’t told all of the information.
I have a lot of kids like Elijah. Chronic medical kids who get close to death and then recover. They have long-term issues, which are exhausting and can lead to divorce and poverty for their parents. I remind the parents and medical staff that these kids are important and valued. We recognize the small goals that they reach. Life can’t be miserable all of the time. We try to bring in joy and happiness, no matter how difficult the situation. We also help families meet basic needs in non-judgmental ways so we can help them figure out what is next. My job is to help the child have the best environment possible.
We built the Bridge Suite for the high-risk deliveries at the hospital and it is a beautiful place for families to bond or grieve together. We are currently in the process of working on a supportive care unit, where kids like Elijah who are frequent flyers at the hospital can come and stay in those rooms. They will be sensory appropriate and the family can stay in a more comfortable setting. And so that is kind of the next step. This is the only program like it in the country and we want others to learn from this.
I am back in school to be a nurse practitioner. There isn’t a hospice dedicated to pediatrics in Mobile. It is a big ordeal to send a kid home who is dying and there is no support.
I believe in finding a purpose in grief. The Bridge Program was born out of my grief watching my son struggle. There were ways I felt like I failed him just because of what I didn’t know. Everyone’s purpose is different. One mom donates egg crate mattress toppers for parents in the NICU because she learned it’s miserable to sleep there on a hard couch for days on end. Another mom gives fluffy blankets with her son’s name because hospital blankets aren’t great.
Some days are happy. It’s victory after victory. Even with the losses, I know I made a difference with that family. Sometimes I meet people at the worst times of their lives. Their kid just drowned or was in a car wreck. I am the first one they talk with. There are times I sit in the stairwell and cry.
Hospital culture is changing. We have to see it from what the patient is going through. The more comfortable a patient is, the better the decisions they make. The public has been so supportive. I put a need out there and people meet it. We recently had a dad that needed to be off work to be with his child who’s not doing well. But he’s the breadwinner and worked three jobs. I asked for help and people responded with $5,000. We not only helped him, but three other families.
Years ago, while we were still fostering Elijah, my sweet daddy told me, ’Rene, you have the potential to reach and help thousands of kids. Thousands. If you adopt this baby, he will be the only baby you help. Are you ok with that?’ I was offended and angry. Of course I was ok with that. Years later, I was taking care of my dad when he had terminal cancer. He grabbed my hand and said, ‘Babe. You proved me wrong. You not only saved my grandson, you helped thousands of families with thousands more to come’. That was probably one of my proudest moments. He was my biggest champion, motivator and expected nothing but my best effort all the time. I miss that man every day.
I fight for my families, especially if they have been treated less than. When I started creating The Bridge, I knew it would only work if families could be met and served exactly where they were. Each family’s unique issues have to be addressed in a way that is supportive to both them and their kiddos. I always hoped this program would be community-based and supported by ‘neighbors helping neighbors’. That is what we have created.”
For more information on the Bridge Program, contact Rene at [email protected].