A New Era of Mental Health Care for NICU Parents – Stanford Medicine Children’s Health Blog

Traditionally, neonatal intensive care units (NICUs) have focused on helping very young and critically ill babies recover. Although always a primary goal, several forward-thinking hospitals have adopted a family-centered approach to care that includes mental health and parental health.

When a baby is seriously ill in the NICU, the stress on parents can be endless and can last for months. Common anxieties include having a difficult birth, fear of learning about the baby’s poor health, dealing with ongoing medical problems, surgery and dealing with what may or may not happen in the future. steady. For Collette and Alex Tabone, their NICU experience included all of these things.

Hurricane 72 hours

After Collette unexpectedly went into labor prematurely, she and her husband, Alex, were put on a 72-hour hiatus. Their daughter, Austen, was born weighing 2.6 kilograms at the hospital. Dominican in Santa Cruz. He was immediately admitted to the Dominican NICU, which is staffed by Stanford Medicine’s pediatric care team. The Tabones were shocked to learn that Austen had a tracheoesophageal fistula (TEF), which means that her esophagus was not connected and that the lower half of it was connected to the esophagus. his spiritual path. They were told she would need surgery as soon as possible and would be transferred to Stanford Children’s Health Level IV NICU that day.

The next morning, Austen’s heart scan revealed she also had a serious congenital heart condition called tetralogy of Fallot with pulmonary atresia, and the couple learned that this condition would complicate the surgery he needs on his airway. On top of these terrifying exams was the moment-by-moment experience of watching the NICU team try to keep little Austen—wrapped in wires and tubes in an incubator—alive.

“I was prepared for every type of birth scenario—except for 72 hours of bad news, my baby being sick, and being a part-time parent,” says Collette. full of NICU. As the adrenaline wore off, so did the emotional breakdown. “We were dealing with a lot of fear, shock, and general disbelief that anything good was going to happen … we were just waiting for the other shoe to drop,” he says. . . In addition to fear and depression, Collette began to experience an inappropriate sense of guilt. Alex, who works as a park ranger and EMT, struggled with feelings of inadequacy at not being able to save her baby, and began experiencing nightmares and hallucinations. – changing.

Taking care of a NICU baby means taking care of the parents

Having a sick baby in the hospital is a heartbreaking experience for many parents, according to Celeste Poe, PhD, NICU attending psychologist and director of the NICU Psychology Program at Stanford Children’s. “With more research, we understand the short-term and long-term effects of a NICU stay on parents, how that affects their relationship with their baby, and the long-term negative consequences,” she says. I can tell a baby,” he says.

That’s why the Stanford Medicine Children’s Health NICU has become a pioneer in supporting NICU parents with ongoing mental health support. A social worker meets with every family whose baby is in the Stanford Children’s NICU. The social worker may continue to work directly with the parents during the hospital stay. Or a social worker can connect them to Dr. Poe for stress-based training focused on behavioral care, as well as parent-child psychotherapy, which is a special way to strengthen the parent-child relationship. The topics discussed during treatment depend on several factors, such as how long the child is expected to spend in the hospital and how often the family wants to have sessions. Some parents are given individual therapy as well as time they share together.

Dr. Poe says: “Some of the greatest gifts we can give parents in this situation are to make it normal, to give them space to admit how difficult it is, and to connect them with resources.” Often, trauma-focused interventions begin by teaching parents about trauma, grief and attachment, then helping them deal with what happened to their baby, while preparing for what’s to come. “There is also room for more reflection, such as discussing what kind of parents they want to be; and we always make sure they can engage and interact with the baby.”

A couple’s trip

Collette and Alex first met social worker Emily Perez, MSW, LCSW. Collette says: “Emily was our guardian angel. Perez helped them with everything from finding hospital beds to filling out employment forms. Every time he visited us, he took the time to ask how we were doing and listen to us. Perez connected the couple with Dr. Poe for more support. Collette says: “He knew we were in good hands with Dr. Poe and he was always checking on us to see what we needed.

During Austen’s 103 days in the hospital, Collette and Alex met regularly with Dr. Poe, together and separately. “Dr. Poe was really good about normalizing everything, telling us that the way we felt was understandable and that we weren’t the first people to experience this. all these things,” says Collette. Dr. Poe worked with Collette on her overwhelming feelings of guilt. Collette recalls:

Dr. Poe also worked with Collette on ways to manage her fears about Austen’s health and the future of their family. “Things like surgeries coming up and wondering if they’re going to kill my child and wondering what our lives are going to be like after all these things,” says Collette. Dr. Poe also helped the couple manage the changes in their relationships—each with friends and family—that occurred as a result of Austen’s illness and their sudden health. Collette says: “Suddenly you are not only dealing with your feelings and fears, but also with other people’s.

Dr. Poe says: “This couple was very special to me, and I loved working with them. “When a family has a child in the NICU, it’s one of the most vulnerable times in their life, and even talking to a stranger like me is a big question. But since “In the beginning, this couple was in love and open to self-examination, which gave me insight into how I could best help them.”

The treatment, along with reassurance from the medical team, helped Collette and Alex cope better with their daughter’s surgery. “The combination of complex heart disease and TEF made Austen’s condition unusual and It’s more complicated, and the premature history added another layer. complex, and TEF/EA. [tracheoesophageal fistula and esophageal atresia] patients, as well as patients with this combination. ”

After the heart surgery, therapy helped the couple focus on bonding with Austen as she gradually gained enough strength for heart surgery. Austen’s pediatrician, Anoop Rao, MD, noticed how well the couple got along as they juggled their careers with the ups and downs of life in the NICU. Despite the difficult days, “however they were focused on giving their child the best they could,” says Dr. Rao.

Support from the whole team

Many doctors helped Collette and Alex emotionally by taking the time to help them understand what was happening medically. Collette says: “From the moment we arrived, we were treated with kindness, compassion and care. For example, “when we were learning about the state of Austen’s heart, there was always a member of the heart team ready to come and reinterpret it.”

Austen’s heart surgeon, Elisabeth Martin, MD, made sure Tabones was clear about Austen’s condition by being transparent about expectations. He says: “I tell the parents the details, I explain to them how things will look step by step to avoid things that do not surprise us, and I explain to them how we will deal with the problems that will arise. Collette appreciated the ability of Dr. Martin gives a lot of details about the heart surgery while being direct: explaining where Austen will go to the hospital, telling which teams will see her, and foretelling whether she will how long was he in the hospital. surgery and what recovery would look like in the Intensive Care Unit. “Dr. Martin told us that Austen ‘bought a lifetime membership to the Cardiology Club.’ This was the first time I sat down and thought about the number of electives, and the next, and the surgeries he would need in the future. ”

Coming home—and to a place of mental health

Collette and Alex continued to work on this diagnosis with Dr. Poe and after they take Austen home from the hospital. “Talking to us as we moved through her life was really helpful because she knew about Austen’s history and she was with us so that she could continue,” says Collette. to take care of us.

Another area they focused on during their outpatient sessions was dealing with anxiety. Dr. “Anxiety can follow parents home from the hospital and can affect how they raise their child,” says Poe. For example, it is common for parents who care for a medically complex child to be overprotective and unknowingly set limits on what their child is allowed to do as they grow up. In general, Dr. Poe worked with Tabones for 28 shows over the course of about eight months. Dr. Poe says: “It is rewarding not only to be a witness with them on this very difficult journey. Seeing what they can overcome for their child is great. Now that Austen is nearly a year old, Collette can step back and appreciate how important it was for her and her husband to receive the mental health support they received and how how they helped during that time. “Alex and I wouldn’t have been able to communicate as well without it,” she says. And I think managing the feelings of isolation would have felt impossible. It’s hard to get help and it’s hard to accept help and support, so being available and available was everything. Controlling the big emotions—guilt, anxiety, fear, isolation—I think we’re going to be in it, and in a much darker place.”

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