Newborn brain injury: ‘we need to see the whole child’

Newly minted doctor Lisanne Baak on the power of working with parents and children in newborn stroke research

When a newborn suffers a stroke, the effects can last a lifetime. Lisanne Baak’s PhD research focused on understanding these injuries. She looked at how children fare as they grow up and explored an innovative treatment: a world-first safety study using stem cells delivered through nose drops. We spoke with her about her findings, what she learned from parents and children, and how her PhD shaped her both as a researcher and a clinician.

During your PhD, you studied children who had a stroke around birth. Can you tell us about your research?

“A stroke around birth is quite rare: it affects about one in every three to five thousand children. But the consequences can be serious. Many children experience lasting impairments, both motor and cognitive, and some develop epilepsy”, Lisanne explains. “I studied how the brain develops after the injury and how the unaffected side responds. But we don’t know much about how these children develop as they grow up. So, the second part of my research followed them later in life to understand the challenges they face”, she adds.

“Currently, there’s no treatment for this type of brain damage”, Lisanne continues. “In the final phase of my PhD, I coordinated a world-first safety study called PASSIoN, in which ten babies received stem cells through nose drops. It was a real team effort, with our team – including my promotors Cora Nijboer and Manon Benders – working with all of the Neonatal Intensive Care Units (NICUs) across the Netherlands. I joined just after my predecessor, Nienke Wagenaar, had initiated the study. It felt like jumping onto a moving train”, she laughs.

That sounds very special. What was it like to work on such a unique treatment?

“It was indeed special”, Lisanne says. “I was the contact person for the families, attending visits, overseeing the first treatments, and answering parents’ questions. You meet parents at a time when they are extremely vulnerable. They often describe the experience as a rollercoaster they can’t get off. What struck me most was their resilience. Even during such difficult times, they were willing to share their experiences and participate in the study. Parents showed a lot of trust in us and in our research, and I truly admire their courage.”

Why is it so important to study this group of children?

Lisanne: “Although rare, this type of brain damage of these children also provide us with valuable insights for other types of brain injury. With MRI scans, we can pinpoint exactly where the stroke damage is and measure the extent of damage over time. In the future, what we learn from the stem cell treatment might also benefit children who have experienced oxygen deprivation during birth (perinatal asphyxia), premature babies with brain damage, or older children with traumatic brain injury.”

You were also in close contact with parents and children during the second part of your PhD. What did you learn from them?

“Yes”, Lisanne nods. “When setting up this part of my research about long term functioning, we weren’t sure what to focus on. Of course, we can conduct all kinds of tests, but it was crucial to align our research with what families actually experience. So, we decided to carry out a preliminary study to find out.”

“Parents and children shared with us the challenges they face in daily life. Interestingly, many of these challenges went beyond what had been diagnosed in the follow-up visits after the NICU, where the focus is often on movement and cerebral palsy (CP). They mentioned attention issues, fatigue, and struggles at school. We then added these topics into our research, which really improved the study. Their input also made me realize that as health care professionals, we need to consider the child as a whole, not just focus on IQ-points or CP”, Lisanne reflects.

You also organized a parent day. How did the idea come about and what was the aim of this event?

Lisanne smiles: “Parents often mentioned they liked to have more feedback about the research they participated in, so I thought: let’s do that! We’re going to share results from various studies, but we also want to listen to parents’ experiences. Together with patient organizations, including Care4neo and CP Nederland, we hope to make the research even better and less of a burden for families. For parents, I think it’s also valuable to meet each other and share their stories.”

Looking back, what did doing a PhD mean to you?

“It was my first real job, so I learned a lot”, Lisanne reflects. “I liked having the freedom to shape my own project. It was tough at times, because I like quick results, and research takes time. But I grew a lot, both in science and personally. I learned to manage a long-term project, understand my strengths, and communicate effectively. Diving deep into this specialized area and applying it in practice was incredibly rewarding. Above all, I’m honored of having worked so closely with the parents and children.”

And what comes next?

“I now work as a doctor in the Pediatrics department in Amersfoort and plan to continue in the perinatal field, focusing on pregnancy and birth”, Lisanne says. “I haven’t decided yet whether that will be through pediatrics or gynecology. But I definitely want to keep combining clinical work with research, because I enjoy both. Soon, a new and larger, study will begin to test the effectiveness of the stem cell nose drops. I’ll stay involved behind the scene with the new PhD candidate who will continue this work.”