Introduction
To close out HIE Awareness month, I sat down with Brigid Janousek. She bravely shares the story of her son William’s traumatic delivery and subsequent treatment with therapeutic hypothermia due to his diagnosis of Hypoxic Ischemic Encephalopathy or HIE.
Infants with HIE have experienced a lack of oxygen to the brain either prior to birth, during the birth process, after birth, or during childhood. Once the brain is deprived of oxygen, brain cells become injured. Once they are injured, the brain cells will either recover or they may die off due to the injury sustained.
Infants with suspected HIE are treated in the NICU with therapeutic hypothermia or cooling that needs to be initiated within the first 6 hours of life. The cooling therapy reduces the rate of brain cell death and the risk of reperfusion injury which commonly occurs due to the release of toxins from the injured brain cells. The cooling process occurs for 72 hours post-delivery and has been shown to minimize the extent of death and disability in children.
Unfortunately, for many parents of children with HIE, they have had an uneventful and healthy pregnancy that suddenly flips sideways in the end and results in their full-term infant being admitted to the NICU in very critical condition. Parents of children with HIE commonly share how difficult the initial 72 hours of therapeutic hypothermia can be. They have to wait until the cooling and the rewarming processes are completed before their baby can get an MRI to visualize the extent of the brain injury. Even then, it is difficult for the NICU Care Team and Neurologists to predict how any damage that occurred during the sentinel event will affect the child’s life moving forward and any disabilities they may endure. And sadly, it is not uncommon for children with HIE to pass away while in the hospital or once they are home.
Brigid shares a more in depth look into William’s time in the NICU, why they felt like they were outcasts in the NICU world and even once they were discharged home, the struggles they endured once they were discharged from the NICU, and how she unknowingly was suffering from postpartum depression, perinatal mood disorder, and PTSD. We discuss ways it was helpful for her to work through her trauma and why she is so passionate about bringing awareness to the fact that not all NICU babies are preterm as well as the importance of focusing on maternal mental health.
We thank Brigid for sharing her family’s very personal story. It is our goal to help bring awareness to HIE and to help break down some of the barriers and social disparities that exist with HIE infants and full-term NICU babies.
Stay tuned, you will not want to miss their story…
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Episode 29
Meet Our Guest
Brigid Janousek
Brigid has been with Stay-at-home-Mom since 2018. Previously, she was a Civil Litigation Defense Paralegal which is where she met her husband, John who is a Civil Litigation attorney. Previously, she enjoyed working at Disney World as an intern in the parks. She is originally from California, but currently lives in Orlando with John and their two children, William Rhett who is 4, Lottie who is now a year old, and Valerie, their black lab.
Since William graduated from the NICU, she has joined several patient committees within the hospital including the Patient Advisory Council, Winnie Palmer Women & Babies Hospital Patient Advisory Council, and she was a part of the Orlando Health Patient and Family Advisory Council. She has also done some public speaking for the See the Difference Tour for the Orlando Health Foundation presenting about their personal NICU journey.
To keep herself rejuvenated, her Starbucks drive thru order is a Venti Chai Latte with an extra pump because as she said, all mothers should have a go-to order!
William’s Deliver
Brigid describes her pregnancy with her son, William as a textbook pregnancy other than some significant morning sickness. At 41 0/7 weeks, he was still comfortably nestled in with her, so she went in for induction of labor. She received 2 doses of Cervidil, but she made minimal cervical change in the process. In the middle of the night, she felt a gush of fluid and presumed her “water broke.” But, once her nurse arrived, they realized that she was bleeding. Brigid describes the scenario as starting out calmly, but the chaos quickly ensued.
They did a stat ultrasound and they pulled her husband, John aside to let him know that they had lost the baby’s heartbeat and would need to do a stat cesarean section. They gave her an injection of medication to stop the contractions, but she didn’t understand why everyone was rushing around.
They were able to recover the baby’s heartbeat, so they monitored her for an hour, but eventually decided to proceed with the cesarean section. She vividly recalls getting the medication for her spinal and knew that it was given at 0425 and her son was delivered emergently at 0431, just 6 minutes later.
Brigid’s obstetrician quietly said, “baby out”, but there was no cry to follow. She recalls hearing nothing. She said you could have heard a pin drop in that operating room. It was at that moment that she realized something was wrong. This was supposed to be a joyous occasion and they should have heard their baby’s first cries, but they heard nothing.
Later, the NICU care team called John, Brigid’s husband over to see him. He was lying on the radiant warmer, pale and limp. John started talking to William and he opened his eyes. The nurse gasped in that moment because it was the first time he had opened his eyes and was responsive. He had already been intubated and had an umbilical line in place.
Per the reports from the physicians and William’s records, he required several doses of Epinephrine to restart his heart and he was without oxygen for several minutes. Brigid said his APGAR scores were 0 0 0 3 at 1 minute, 5 minutes, 10 minutes, and 15 minutes respectively. Brigid’s amniotic fluid was meconium-stained and there was a triple nuchal cord, meaning his umbilical cord was wrapped around his neck three times. He weighed 8 lb. 5 oz. at birth.
The First Few Days
William was taken to the NICU as Brigid was taken into recovery. Brigid admits that several of her memories from the delivery and the following day or so were blurry and she only recalls bits and pieces. She does remember when her obstetrician and her husband informed her that William had been taken to the ECMO unit in the NICU and he had been placed in a cooling suit.
Brigid was wheeled in to see William in the NICU and she recalls him looking like a rag doll as he was lying on the radiant warmer. She was only allowed to touch his feet.
She later recalls waking up in her room and soon discovered that they had placed her on the gynecological floor as opposed to the typical postpartum floor so she did not hear other babies crying. She greatly appreciated the intentions behind that especially since they did not know what William’s outcome would be. She raved about the kindness she received from everyone during their experience in the hospital.
Once she was strong enough, she was able to visit William more often. She said he continued to appear like a rag doll in the cooling suit. As parents, all they could do was wait as he was cooled for the typical 72 hours.
Brigid had a hard time wrapping her head around how her 8 pound, term baby was in the NICU. She thought only preterm infants were in the NICU. As she looked around and saw all of these tiny babies, she at that time felt that they were “worse off than us.”
Hypoxic Ischemic Encephalopathy
Brigid and John first heard the term HIE or Hypoxic Ischemic Encephalopathy when William was a couple of days old. They previously had not been given a diagnosis for William’s condition and everyone just explained that they needed to wait and see what his outcome would be after the cooling.
Unfortunately, their initial introduction to HIE was when a nurse handed them a pamphlet on the diagnosis as they were leaving for the evening. Brigid said she recalls completely panicking as she read it. Within the pamphlet, it explained that their son William, may not recover from his condition or even if he does, that he will have significant impairments.
William did experience some seizures during the cooling process, which is common. He was placed on medications to prevent the seizures from reoccurring. Once he was slowly rewarmed, William had his MRI. Brigid and John were called to come in so the Neonatologist could speak with them. Brigid said she was terrified and it was one of the worst trips to the hospital. She was completely spiraling thinking of all of the potential what-ifs.
Luckily, the Neonatologist let them know that overall, she had good news to share with them. William’s MRI showed a couple of concerning areas on his basal ganglia. Once Brigid learned that the basal ganglia is the area in the base of the brain that is involved in coordination of movement. She felt relieved!
William was eventually weaned off of his medications, he was on CPAP for awhile but was eventually weaned to room air. He also had a feeding tube, but with time his seizure medications were adjusted and he was moved from the ECMO unit to the step-down unit. He had some difficulty passing the car seat trial, but with time passed it and was able to be discharged home after spending 18 days in the NICU.
Jumping out of a plane without a parachute
Brigid describes their discharge process to home as if they were thrown out of a plane without a parachute. While in the NICU, they were surrounded by nurses and had a large amount of support. She specifically felt that since he was a full-term infant, there was a lack of follow-up because their NICU follow-up clinic did not apply to him. Here they were just a few weeks after an incredibly traumatic event with their baby that almost didn’t make it and they had zero support.
William did continue to thrive and was eventually discharged from PT and OT. He has been followed by a Neurologist for the first 5 years as well. But, as with all children affected by HIE, there was still a lot of questions and unknowns and they felt that all they could continue to do was “wait and see.” They were told that William could be affected by a lifelong disability or that he may not have any sequelae from the HIE. Brigid said she personally struggled the first year because she felt as though they were just waiting for something to go wrong with William. In 2021, William was diagnosed with autism and they strongly feel that the two are connected.
Did you appreciate that they kept you calm and did not fully inform you of the events leading up to William’s delivery?
She said that looking back on it, she appreciates that they kept her calm. She said with her personality, the information would have thrown her into disaster control mode and at that point, there was nothing she could do to fix the situation. She does wish that the hospital would have been more forthcoming with William’s diagnosis of HIE in general and prior to his discharge home.
How did you go about finding resources and support?
Brigid did not find herself referring to Google too much for information early on, but more so when William was a year old because they felt that he was behind with some of his developmental milestones.
Brigid said she wishes that they had been given more information about HIE throughout William’s hospitalization and in the early days, other than a pamphlet. She also would have liked to have been referred to more helpful and supportive programs, like Hope for HIE. Hope for HIE provides a wealth of information and support for families with children affected by HIE.
What are some of the ways you felt as ostracized as NICU Parents throughout the process?
Brigid said that while they were in the NICU, they noticed flyers for the NICU calendar events for families and they felt like they didn’t belong because their baby was full-term. She now recognizes that they belonged there just as much as the other parents, but she wishes that she knew that then.
Brigid also attempted to attend a lactation support group once William was home, in an attempt to find a community and “feel like a Mom.” While they were there, she felt as though they were unable to answer her specific questions which left her feeling very lonely and isolated.
It was difficult because on the outside, William appeared to be a healthy, full-term infant, but on the inside she was utterly terrified for what William’s future may look like.
Becoming involved in hospital organizations and sharing William’s story
Once William had been out of the NICU for a year, they attended the yearly event in September for NICU Awareness Month. Brigid’s mother was speaking with the Director of the Foundation and shared their family’s story and some of the barriers they endured along the way. The director informed Brigid about the NICU Parents’ Council and the Advisory Council and strongly encouraged Brigid to become involved. The director regretted that they had not fully met their families’ needs and they wanted to do better and needed families like them to help guide them accordingly.
Taking the first step towards recover
Brigid was initially concerned about becoming involved. She was nervous about opening up an old wound and becoming so vulnerable with some of her struggles. She was embarrassed to admit that she had struggled as a Mom. But, she later found her volunteer work to be a huge blessing. By being able to talk to others and by openly sharing her story, it became her own personal therapy. She absolutely loves connecting with the NICU families.
Do you feel that there are societal disparities and misunderstandings for term infants in the NICU?
Brigid said she very much feels as though there are societal misunderstandings regarding term infants in the NICU. As we said, since William appears healthy and without tubes, she feels that his condition and potential outcomes have been downplayed.
Brigid has made it part of her education and mission to change the narrative that not all NICU babies are premature infants. She said that this common social disparity can leave families feeling very isolated and excluded. She appreciates that organizations like Hope for HIE help to bring awareness to this issue and break down some of the common misconceptions.
What are some other ways we as a society can promote inclusivity for all NICU infants?
For Brigid, she personally found that their follow-up physicians did not fully understand or know about HIE. She said that she felt as though she had to be William’s walking medical record and explain more than what should be expected of a parent to other providers. She would have loved to not have to carry that with her at every appointment and greatly appreciated at one particular follow-up when a provider knew exactly what HIE was and she could lay that burden down for a minute.
What are some other ways that have helped you personally work through your trauma and PTSD?
Brigid recalls walking off the elevator during her first foundation tour and the smell of the NICU hit her. But, as she looked around and saw all of the familiar settings, she quickly realized that she, nor William were patients any more. The more that she came back and presented, the more she felt empowered. She no longer had to stand outside and wait to be allowed in to see her own child, her volunteer badge gave her complete access. Although it took her awhile to get there, she has found the experience to be very therapeutic.
Acknowledging the trauma, postpartum depression, and PTSD
Brigid now looks back on William’s first year of life and realizes that she was struggling with postpartum depression and PTSD. It makes her sad because she said that her husband, John and William are very close and they bonded rather quickly. She said that it took her longer to bond with William and they are connected, but in a different way. She said she carries a lot of guilt due to his initial experiences and his time in the NICU.
She did not feel as though she was suffering from postpartum depression initially. She was told that everything was fine at her 6-week follow-up appointment. Christmas followed and she was doing well, until she wasn’t. She admits that she had a lot of good days, but also many days where she was struggling.
Once William’s first birthday was approaching, she started to remember more about his delivery and the days that followed. She kept replaying how quiet it was in the room after they delivered him emergently.
Once she recognized that she likely needed additional help, it took her a month to get in to see her obstetrician. Sadly, once they saw her there, they said that they had been waiting on her and that they were not surprised at all once she arrived there with postpartum depression. She was immediately outraged, rightfully so, and wondered why no one had reached out to her to check in on her if that’s how they truly felt.
Brigid’s obstetrician even admitted to seeking some counseling after William’s delivery because it was so traumatic, but yes, why had no one reached out to her for the last year when she was at home struggling? She felt that the volunteer opportunities were presented to her at the right time. She also sought counseling and was started on some medications.
Maternal Mental Health Matters
Brigid enjoys working with the NICU families and speaks to them about how common postpartum depression and PTSD are for NICU parents, especially mothers. She educates them on how a perfectly “textbook” pregnancy like hers can go sideways in a matter of minutes and change everything. But most importantly, that as a parent, you will be deeply affected by that in the years to follow.
It is likely for NICU mothers to experience perinatal mood disorder. She and her husband also speak with the fathers or significant others and they educate them on some of the subtle signs to watch for before it becomes much worse.
NICU trauma and PTSD are very common for all NICU parents. Once your infant is admitted into the NICU, it is considered a traumatic experience, whether they are there for 2 days or 4 months. We both encourage parents to be proactive about getting counseling to work through the process before some of the commons signs start to show up. Parents that are processing trauma or experiencing PTSD will interact with their baby differently than a parent who did not endure trauma. If it is not dealt with in a healthy way, it can ultimately affect your baby’s outcomes due to your inability to fully bond with and nurture your baby.
Closing
Thank you again to Brigid and the Janousek family for sharing your deeply personal story. It is so great to hear how William is progressing and I know he will continue to thrive with all of the love and support from his family. I love how courageous and strong these families, and especially the Mothers are who have chosen to take their very traumatic experience and all of the lessons they have learned along the way and give back to help other families.
It is difficult to talk about your trauma, to openly share your story, and to admit that you were struggling whether it was with depression, PTSD, maternal guilt, or even bonding with your baby. But, I also know that not only do we grow by exploring our feelings and working through them, but we can also serve other families by sharing our stories and educating them. It is exactly why I created Empowering NICU Parents and this podcast. If I can help one family along the way, by supporting, educating, and empowering them, but most importantly ensuring that they know they are not alone, then it is all worth it. Thank you again, Brigid for being brave enough to openly share your experience, but for also finding the courage to volunteer your time and help so many others through several platforms.
We also want to continue to honor all of the children and families affected by HIE and not just in the month of April, but year round as well. We remember those who have lost their battle from HIE or complications associated with it and want to continue to bring global awareness to the social disparities present for term NICU infants and to continue to strive for inclusive messaging.
Brigid continues to praise the nurses and clinicians at the hospital where William was born. She described the nurses as a “team of fairy God-Mothers” which I thought was so beautiful! John and Brigid went on to have Charlotte, who they call “Lotte” in 2020. Other than being born during the pandemic, she has been a healthy, lovely addition to their family.
Contact Brigid Janousek
Remember, once empowered with knowledge, you have the ability to change the course.
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