Below is our specific
story that will be shared in the HIE community book that is set to be published later this year. I encourage
anyone reading this to check out the book and other family stories
as there are such a wide range of outcomes. We are just in the
beginning stages of ours and I am so elated to read the book
that will also have medical staff's stories too. It will be available for
purchase through Amazon and there will be a digital version available for
download, more to come!
Tina’s Story: Learning to Live, Not Just Survive
After having a miscarriage with twin boys a year
before, Tina so desperately needed things to go well during her pregnancy
with Olivia. There were a few minor issues along the way—around 28 weeks in,
Tina was told Olivia was measuring pretty small, and Tina developed gestational
diabetes during the end of the pregnancy. Because
Olivia wasn’t growing at the
rate she was supposed to, the doctors informed Tina that when she would deliver
Olivia at 37 weeks, her daughter might need lung support. But never was she
warned about what was to come.
After Tina pushed one final time in an induced
labor that fell 23 minutes short of 40 hours, the doctor reached out to lay
Olivia on Tina’s chest. When Olivia only made it to Tina’s lower abdomen
instead of all the way to the chest like she is supposed to, the doctor instinctively
blurted out, “Wow, that’s a really short umbilical cord." But as a
new parent, Tina didn’t know how long the umbilical cord was supposed to be—in
that moment, all that mattered was the warmth that suffused across Tina’s skin
as she came into contact with Olivia, vowing to protect and love her beautiful
baby girl unconditionally. Her husband, Daniel, then cut the cord. They knew
the doctors needed to see if Olivia would be able to breathe on her own, so
after a moment of soaking in the
overwhelming
joy of parenthood, they handed Olivia off to a NICU nurse for the necessary
assessments. At merely 4 pounds 5.6 ounces, Olivia was
tiny. But what shocked Tina and Daniel most as they handed Olivia off to the nurse
was not her size, but her pale gray complexion and the floppiness of her arms.
Images of worst-case scenarios swirled through Tina’s mind, and it seemed like
hours before they received an update about Olivia. When the door finally opened
again, sounds of cheers filled the room, as it was announced that Olivia was
safe, healthy, and able to thrive on her own. Tina wanted so badly for this to
be the ending of her birth story. She wanted to believe that
everything was okay like the nurse said it was, that all the pain she endured
along her journey of becoming a mother—from the loss of
the twins to the anxieties during pregnancy—was finally over. But life is messy and unpredictable, and so too was this HIE journey they
didn’t realize they were just beginning to embark
upon.
Surrounded by their mothers and Tina’s siblings,
Tina and Daniel tried to hold onto the happiness of being new parents.
As she held Olivia, all bundled up in a white hospital blanket, Tina was amazed
at how something so tiny could also be so precious. But she also couldn’t help
but notice how pale Olivia was, like a fragile porcelain doll—a delicate and
beautiful but inanimate, motionless porcelain doll. Tina did not want to seem
like one of those crazy overly anxious mothers, so
she casually mentioned her concerns about Olivia to the
labor and delivery nurse. The nurse tried to stimulate Olivia multiple times,
but she still wasn’t getting much reaction. Concerned, she told the main NICU
nurse that she was uncomfortable with Olivia being left for the night with her
parents, since her tone and color were not typical. However, the NICU nurse
confidently stated that since Olivia had passed the necessary “tests,” these
worries were unfounded. Thus, Olivia was left with Tina for the night. That
night, Olivia would not feed at all, and when she was lying down, she seemed
eerily still. Tina kept trying to convince herself not to worry. The NICU nurse,
without hesitation, had said Olivia was okay, so it must be true, right?
“Right,” Tina kept repeating to herself. “Wrong” was not an answer she could
bear.
But that morning, all of Tina’s visceral fears
came to life. Olivia went to the NICU to get labs done, and once her
vitals were finally checked, her oxygen levels were in the 70s, severely low.
Olivia’s visit to the NICU was just supposed to be the final, quick “okay”
before going home. So, when Daniel and a nurse came back to Tina’s room
explaining that Olivia had been admitted to the NICU indefinitely, she
completely broke down. Even with
both Olivia’s grandmothers and
her uncle in the room, Tina could not hold back the tears that seemed as if
they would flow forever. After a couple hours of rest since her
body was physically exhausted from the lengthy labor and
delivery, Tina was wheeled to the NICU to see Olivia. Nothing could have
prepared her for the terrifying image she saw. Olivia was hooked up to a large
CPAP machine so that her face was covered, an IV was connected to her
scalp, there were 28 EEG leads coming out from her head, she had stickers all
over her chest, and she had a towel that was strapped down over her tiny
body. Guilt and confusion flooded over Tina, and the whole world just seemed
so surreal…. this had to all be some sort of sick nightmare. Her prayers and
hopes shifted from wishing for a healthy baby to wishing for a baby who was
still alive. No one had even informed Tina or Daniel what
all these machines or wires were for, so they felt utterly buried in the dark.
A pediatric neurologist finally explained what everything was for, and after a
few MRIs and EEGs, Tina kept hearing that Olivia had suffered a
perinatal stroke that left the entire back part of her brain severely damaged
and filled with cysts. During the 26 days in the NICU, that is the word Tina
remembers hearing most—stroke. She actually did not hear the term HIE for
quite a while, and she just felt so lost, like the gloom and doom would never
end. Upon receiving the MRI results, the neurologist said that Olivia would likely
have a lifelong seizure disorder, be completely blind, have a
speech delay, and develop cerebral palsy. Tina asked for the neurologist to
rephrase some of what he was saying, searching desperately for even a tiny
sliver of hope. As a fix-it type of person, she remembers asking him,
“What can we do to get out of this situation?” Unfortunately, there was no
escaping the new reality they would have to learn to live with.
Those 26 days in the NICU were exhausting and
characterized by an abundance of any and all emotions, but Tina
and Daniel were there every step of the way. They were able to stay in a room
in a different section of the hospital, but the communication from the NICU to
them was fragmented at best. Tina quickly learned that to stay
updated about what was going on with Olivia’s care, she and Daniel needed to be
present at rounds each morning. At the hospital, Tina and Daniel learned the basics
of how to take care of Olivia, learning how to bathe her,
feed her, and give her seizure medications. But other than that basic training,
they did not receive resources, an explanation as to what HIE was exactly, or
clear instructions for next steps. They were essentially discharged with
the advice to just take Olivia home and love her. Two days post-discharge,
Olivia ended up having an apneic
event and turning blue, so she
was admitted to the hospital (a different one from where she was previously)
for around a week. After that week, they were finally at home for
a bit and began to settle on the rhythm they have
landed on now, one and a half
years later. Tina and Daniel have since decided to transfer all of Olivia’s appointments
and therapies to a larger hospital in Seattle, and even though it may be
further away from their house, they would travel the ends of the earth if it meant
giving Olivia the best care possible.
In the beginning stages of being at home, Tina
was essentially operating on survival mode. Her days were filled travelling
from appointment to appointment, and by the end of the day, it was hard not to
feel completely drained. However, Tina is grateful for all the supports she did have
along the way. Both of Olivia’s grandmothers are
extremely engaged in her care,
willing to lend a helping hand to relieve some of the childrearing burdens off
of Tina and Daniel. Their siblings have also begun to learn how
to best take care of Olivia so they can help out as well.
In addition, Tina is grateful that because she worked for her stepdad
part-time, he was flexible with her if she couldn’t come in for work at the
last minute because Olivia was having seizures. And when Tina learned about
Hope for HIE from a coworker a few months into Olivia’s HIE journey, she
finally found a community of people who were able to understand what she was going
through. Upon joining Hope for HIE, Tina felt like for the
first time in a long time, she was gaining some semblance of clarity. By
connecting to different HIE moms,
Tina was able to learn about
different treatment options and conditions associated with HIE, and that information gap she
struggled with for all those months began to close. Even after the neurologist
said that Olivia would be completely blind, Tina could swear that every time she opened
the blinds a little bit to let light seep in, Olivia would
flinch. When she would tell others about this, they would just dismiss it,
saying Olivia probably just heard
a faint noise when the blinds
moved. They probably thought Tina was in denial, not willing to accept a
reality in which Olivia was fully blind. However, upon joining the
group, Tina learned that there were levels of blindness, which
is something she had never considered before, and she also learned about the
possibility of cortical visual impairment (CVI). Upon taking Olivia to the
ophthalmologist, a diagnosis of CVI was confirmed. After all that time
being labelled as “in denial,” it felt empowering for Tina to know that her
mom-gut was right all along. Another aspect of Hope for HIE that Tina really
appreciates is that it’s not only a community of parents, but also a
collaboration among providers and parents, ensuring that the knowledge that is
shared is reliable and evidence-based. And in a journey where the sadness can feel
all-consuming at times, the group has been a source of hope and beacon of light. Learning about
neuroplasticity through the forums and how the brain can adapt and evolve
over time has been a game changer.
For so long, Tina felt suffocated by the trauma
and guilt associated with Olivia’s birth. She would lay awake at night
thinking of all the what-ifs: What if she had been more adamant to the nurse
that Olivia was not okay and
should have spent that first
night in the NICU? What if she had realized that something wasn’t right sooner? In addition to the HIE journey, Tina has had to
start on a journey of self-forgiveness and realize that with the medical
knowledge she had at that time, she did her best. She may not have been perfect
and she will never be perfect, but who is? On top of all that, she had to cope with
a different type of loss…. not the loss of life in the literal
sense, as with her miscarriage, but the loss of the life she thought she would
share with her daughter. She had all these dreams and visions of Olivia
running around in the backyard with the dogs or Olivia joining sports teams
in school, and in an instant, all of this was flipped upside down. In the wake
of this loss, she lost sight of who she was as an individual, as a mother, and
as a partner. There were days where she felt such deep shame—shame for not
being that perfect mother for Olivia, shame for feeling sad when her daughter
was still alive, shame for arguing with Daniel instead of considering the
unique pain he felt as a father. She realized that keeping all
these feelings buried to herself was only preventing her from rediscovering who
“Tina” was in this new, unanticipated life. So, after the encouragement of a
friend who had blogged throughout his own mental health journey,
Tina decided to start her own blog, pouring her heart out into the world and
being more vulnerable than she had ever been before. For her, putting her
thoughts and emotions to paper and being open about her feelings—the good and
the bad—has been irrevocably cathartic and freeing. Since writing her first
post when Olivia was five months old; she has received so
many positive responses from friends and family members who are appreciative of
the rawness of it all. Even though it is terrifying to share the deepest parts
of herself for anyone to judge, Tina has felt more empowered than she ever has.
Through not being afraid to speak up, Tina hopes she can inspire others to
similarly open up and help others realize they are not alone in their
struggles.
In addition to blogging, Tina was willing to try
anything to climb out of the hole she felt trapped in. She started seeking
therapy to deal with her trauma, reading self-help books, and even posting
different motivational quotes on her mirror. To any HIE parent out there who
feels adrift in a foreign world, Tina cannot emphasize enough the importance
of finding what works best for you to work through the trauma and begin to move
forward. From the get-go, Tina has learned that without some sort of outlet or
way to engage in self-care, the days can so quickly consume you. For her, there
have been days where she has to get work done, take Olivia to multiple
appointments and therapy sessions, and on top of that, try to
cook and clean and maintain the household. For a while, she felt completely
depleted before bed, and her mindset was so focused on merely surviving the day
instead of proactively enjoying the day and remaining grounded in it.
Now, she still has days where she feels like she is barely holding on, but she
is beginning to open herself up to more joy and lightness in her life than she
ever thought was possible when she first learned about Olivia’s HIE. She has
become more honest with Daniel about how she is
feeling, and she has realized just how much of a difference having a partner
who is on the same page as her has made in her own life. Tina would tell other
HIE parents who are in relationships to not forget to check in on their partners and to keep an open line of
communication with one another.
Tina had always grown up with the mindset that
you have this disease, and then there is this cure—it’s a one and two and
then done. But throughout all of this, she has come to accept that with HIE,
there is no simple linearity. Instead, the journey with HIE is a slow, ongoing,
constantly evolving process, so instead of focusing on how to “fix”
or “cure” Olivia, she has learned to appreciate the everyday moments and
inchstones with her beautiful daughter. Even if Olivia’s progress may not be
visible day to day or even month to month, Tina reminds herself that
Olivia is doing big things in little increments, whether it is putting a little
bit more weight on her foot than the
day before or making it
successfully to the beach without having to pull over due to Olivia’s seizures.
Yes, life may be complicated with all of Olivia’s diagnoses, but Tina
doesn’t want to miss out on the happiness of motherhood by focusing on a future she can’t
control. Now, at one and a half years old, Olivia is an animated, energetic girl.
She loves being around people, talking on FaceTime, and moving around a lot.
Her smile can brighten up even the darkest of rooms. Even though they may have
a long way to go and are just starting on their
journey, seeing how far Olivia
has come from when she was born to now is hope in and of itself.
Tina is not only proud of who her daughter is
becoming, but she is proud of who she herself is becoming thanks to Olivia.
Olivia truly is the greatest teacher Tina could have asked for, teaching Tina
about accessibility, inclusion, advocacy, and patience. Before having Olivia,
Tina never mocked people with disabilities, but she also never thought twice
about accessibility or was careful with her terminology. Now, Tina has become a
staunch advocate for those with disabilities, educating those around her about
accessibility through her blog, social media, and
daily conversations. In
addition, because of Olivia, Tina has learned what true patience is. She has
learned that a developmental delay is a comma, not a period, and even if
Olivia will not be rolling over tomorrow, it’s finding value
in the seemingly small things that matters. She has become so much more
grateful for everyday life and celebrating the tiny victories, and when the road
ahead seems too daunting, one saying really resonates with her: “Is
it impossible or you just don't know how? Because if you don't know how, that
means there's a way. “It reminds her that even with HIE, it is not
impossible to live happily, and just because progress may be slow, it doesn’t
mean that Olivia will be stuck where she is at forever. And even if Olivia may
never reach certain milestones, this life that they are building together will
have no shortage of love, faith, hope, or joy. The relevant question
is not, “What will tomorrow look like?” but “How can we find the meaning in
today?”
