No one understands what a NICU parent is going through like another NICU parent. Hand to Hold’s trained, volunteer peer mentors have walked the journey before you and have the knowledge and understanding to offer the comfort that family and friends may not be able to provide. Peer mentors empower parents to problem-solve and become advocates for their families and themselves.
Most of all having a peer mentor helps parents feel less alone.
We spoke with three of our volunteer peer mentors, Rochelle DeOliveira of Cleveland, OH, Susan Rayborn of Dallas, TX, and Miranda Heaston of Austin, TX, to find out what led them to being a peer mentor and what helping other NICU families in need of support means to them.
Tell us about your NICU experience.
Photo courtesy Rochelle DeOliveira
Rochelle: My husband Kevin and I welcomed our son Noah in May of 2016. We found out that morning through a routine ultrasound that there was a problem. The ultrasound was recommended as a precaution since my husband had been out of the country and the ZIKA outbreak had been gaining a lot of attention. Little did we know ZIKA would essentially save his life. He was delivered unexpectedly at 32 weeks at Cleveland Clinic’s Fairview Hospital, due to severe IUGR/Reversed Diastolic Flow. He weighed just over two pounds. Two days after birth, Noah was transferred to the Neonatal Intensive Care Unit at Rainbow Babies and Children’s hospital for surgery, related to losing a significant portion of bowel (due to the IUGR). It was there that Noah would spend the next 97 days of life and undergo a total of four surgical operations, in addition to various other procedures and interventions necessary to save his life. Upon coming home from the NICU, Noah experienced severe cholestasis (liver disease) due to the intense amount of TPN he was on for the length of his NICU stay, as well as slow weight gain, and various GI issues. Today he is a thriving 2-year-old who runs circles around us.
Susan: 21 years ago I was carrying twins, and my water broke at 28 weeks. We had twin boys delivered, Zach and Blake. We began the journey of three steps forward and two steps back, as they say in the NICU navigating new terms, diagnoses, feeding schedules, kangaroo care. Zach was diagnosed with sepsis and began very heavy antibiotics. As Zack was recovering, at 24 days old Blake began showing signs of necrotizing enterocolitis (an infection in the intestines). He went into surgery, but too much of his intestines were involved and they could not save him. He died at 25 days old. Zach continued to recover and get stronger, and we took him home two months after he was born.
Miranda: It was very lonely and I felt very isolated. Though I had friends in NICU with me, we were all going through this for the first time… then seeing those friends exit NICU and leave us behind was disheartening. I had one work colleague that had just gone through NICU with a set of boy twins born at the same gestation. She had some helpful books and words of encouragement that really got me through and encouraged me to join Hand to Hold.
What led you to volunteer as a Hand to Hold peer mentor?
Rochelle: At the time of my son’s birth, I was working as a licensed mental health counselor. One of the first things I did was attempt to seek out support within the community. There was nothing. It was so lonely, and my struggle to heal was made more difficult because of it. Offering my support as a mentor would mean I could change that in one small way for another parent who would walk where I did.
Susan: Because I have the NICU experience and I’ve reached a stage in my life I’d like to volunteer. I contacted one of our nurses from the NICU and she told me about Hand to Hold.
Miranda: The desire to pay it forward.
How long have you been a Hand to Hold peer mentor? How many families have you mentored?
Rochelle: I celebrated my one-year mark as a peer mentor in September.
Susan: About 9 months, one family
Miranda: I honestly do not know how many families I have mentored. Some have been just a few conversations, others have continued for years. I started mentoring when my children were four, so about six years.
What do you think makes of a good peer mentor?
Rochelle: Being in a place personally with your own NICU journey that you are able to effectively empathize and support another parent in their own journey. Being able to offer that perfect balance of crying right along with them, while also giving them strength and confidence to keep marching onward through the darkness, knowing they are not alone.
Susan: Listening, listening, listening. I can not change the situation, but I can identify with the situation and listen. It is more comfortable for them to talk to one of us because we know the language and many of the procedures that they would have to explain to other friends or family members. It’s a way to process with someone who has been there.
Miranda: Being available. Whether its calling, texting, emailing, I want them to know that I’m always available.
What advice would you give to a new NICU family?
Zach (C), born at 28 weeks, flanked by Scott & Michelle, born at 35 weeks. Photo courtesy Susan Rayborn
Rochelle: Whatever you are feeling – anger, heartbreak, grief, hopelessness, fear, joy, gratefulness, numbness, shame, guilt, disbelief – they are all normal. You are not alone. Reach out for support. Talk to other parents who have been in the NICU. And maybe most importantly, take care of yourself. You will be the greatest strength to your child if you care for your own well being. Allow yourself to take time away from the NICU without guilt, to eat, to sleep, to breathe fresh air. You too are fighting an incredible battle, so be kind and gentle with yourself.
Susan: Spend as much time as you can in the unit for feedings. We liked coming early or late because it was quieter and we could have conversations with the nurses about our babies.
Miranda: Take some deep breaths. Give yourself a break. Know that you are already doing everything you’re supposed to.
What advice would you give a to new peer mentor?
Rochelle: Don’t focus on feeling like you need to say all the right things to your mentee. Think back to what it was like when you too were in the NICU. I’m probably not far off when I say that there was next to nothing someone could say to you to make you feel better or make it all ok. Just know that your presence with them, your willingness to stand with them in their pain, and your genuine understanding of where they are at means more than anything anyone could ever offer them.
Susan: Listen. Pray if you’re a family of faith. Don’t make your experience their experience. Be available to listen.
Miranda: Listen closely. Don’t have all the answers, because every situation is different. Let them know you are there and understand how scary it is.
What is the most rewarding aspect of being a peer mentor?
Rochelle: Making meaning of what I went through with my son and my own personal journey to healing. It would have made all the difference in the world for me if I had been able to connect with a mother who had walked where I was. Being able to offer that to a NICU parent now, from the other side, is so healing and powerful.
Susan: For me it was the day my mentee texted she was bringing her baby home! In general I’d say knowing you survived this experience and want to walk it with someone else. For the mentee to know there are families on the other side of a NICU experience because when you’re in the middle of it, it feels like you’re drowning at times.
Miranda: The friendships that have flourished from helping a family.
What would you like everyone to know about the power of peer support?
Photo courtesy Rochelle DeOliveira
Rochelle: In addition to mentoring through Hand to Hold, I’ve also started a NICU parent peer support group in Cleveland where I live (the first and only one of its kind). I’ve often said to people close to me when they ask about what I’m doing, “It’s like having been on this horrible climb through a dark tunnel, but some crazy way you make it through with your flashlight. When you finally arrive at the end and pull yourself out, it only makes sense to pass your light back to the person behind you so they have a shot at getting out too.”
Susan: Peer support helps the new NICU parent to have someone on the inside, so to speak, who has gone through the experience and is willing to walk beside them during their stay and beyond.
Miranda: It is such a short amount of time that you get to spend with a family, but it makes the difference in feeling alone and hopeless to feeling heard and hopeful.