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Katie’s Story: Journeying with Jolene

April 30th, 2022  | HIElights of Hope

Name: Katie Spinks

Location: Virginia, United States

Child’s Birth Year: 2020

Keywords: New to HIE, Navigating Sibling Relationships, Miscarriage, Pregnancy After HIE, PTSD & Mental Health

Katie lives in Virginia with her husband, Robbie, and her four children. Her three daughters are ten, three, and one and a half, and her son is six. Jolene, her youngest, is her HIE baby. During her pregnancy with Jolene, Katie was confident that she would be born healthy and full of life like her older three children. Everyone was so excited that their family of five would soon expand to six. Katie envisioned Jolene accompanying them on all their family adventures, from cooling off by the pool in the summer to pumpkin picking in the fall. But when Jolene was born on January 1, 2020, these visions were soon washed away by a sea of uncertainty.

When Katie was well into her labor at the hospital, already 9 cm dilated, her uterus suddenly ruptured. The doctors didn’t seem to act like this was a pressing concern. In fact, by the time Katie was in an operating room to get an emergency C-section, almost two hours had passed. When Jolene finally came out, she wasn’t breathing at all, deprived of oxygen for the first forty-seven minutes of her life. Jolene received CPR three times and was then intubated. She was transferred to the highest-level NICU, where she would spend a total of sixty-eight days.

Upon arrival, Jolene underwent hypothermic cooling for seventy-two hours. After being rewarmed, she received an MRI, which showed severe global brain damage. For the next three weeks, Jolene was essentially comatose. She didn’t wake up, move, or do anything on her own. Katie was absolutely terrified. She had no idea when or if Jolene would ever wake up, and she felt helpless knowing there wasn’t much she could do to convince Jolene to hold onto life other than be by her side. But finally, in the biggest moment of hope since the birth, Jolene’s beautiful eyes fluttered open. Her prognosis still looked grim. The doctors said, if she were to survive, it would be highly unlikely that Jolene would ever walk, talk, or have any semblance of independence. Katie and Robbie were told to put Jolene in a home, because they would never have a normal life otherwise. They were told that continuing to fight for Jolene would be too hard on both them and their children. In spite of being painted the darkest picture possible, Katie held the mindset that she would never give up on her baby girl until Jolene showed her that it was her time to go.

Yes, life is difficult, as the doctors had anticipated. Jolene has epilepsy, cerebral palsy, a hearing impairment, visual impairment, and hypertonia. She can’t suck or swallow, so she has a suction machine and is fed through a G-tube. But she continues to surprise Katie everyday by doing things none of the providers anticipated she would be able to. Jolene started in various therapies from a very early age, and because of all the hard work and perseverance she shows in her sessions, she is now close to standing on her own. She has an adorable diva personality, and if all the attention is not on her, she will definitely express her displeasure. Jolene loves being held and loves when her older siblings read to her. Although she can’t hold toys by herself, she is content, as long as her siblings are playing near her. Given all Jolene has endured and continues to endure, she is definitely a happy baby.

Each day, Katie is just proud of being able to take care of Jolene, because it’s hard work and it can be scary. When they first came home, Katie hired a home nurse, because she was afraid to even touch Jolene and risk inadvertently harming her. But seeing Jolene’s strength on a daily basis inspired Katie to face her own fears, as well, and to be there for her daughter, for Jolene is certainly someone you don’t want to miss out on spending time with.

Katie also had her three other children to consider. It’s been easiest for her now three-year-old daughter to cope with the transition of having Jolene at home, since this life with HIE is basically all she’s ever known. But it was harder to explain to the older two why, suddenly, the family couldn’t go on the action-filled vacations they used to take. When Jolene first came home, Katie sent her son to stay at her father’s house, because he was upset that there was not much time for him one-on-one anymore. He has now come to accept that Jolene needs a little more attention due to her medical complications, but it has taken Katie’s oldest daughter a little longer to reach that place mentally. She has been seeing a therapist for a few months now to work through her feelings about this drastic shift in family dynamics.

The reality is that eyes need to be on Jolene basically all the time, especially because of her seizures. To make sure that none of her other kids feel like they are forgotten or tossed aside, Katie tries to engage them in Jolene’s care as much as possible. Everyone in the family loves Jolene for who she is, and it’s been amazing to see how much more compassionate and accepting of differences the whole family has become. Now, whenever the kids see somebody sitting by themselves at lunch or alone in a wheelchair on the playground, they’re the first ones to go up to that person and befriend them. Jolene has shown each member of the family that those who look different are no less worthy or deserving of love and friendship.

As wonderful as Jolene is, there have been days where Katie has felt utterly broken. Katie still grieves over having to replace the life where she could take her kids to the beach all summer for a new life of therapy sessions and doctors’ appointments. But in those moments, she is really grateful for the Hope for HIE community for showing her that she is not alone. Through the group, she has become close with two fellow HIE moms, and it’s so validating to be able to express her emotions to people who truly understand her lived experiences. Jolene also has two physical therapists and a palliative care nurse, who are amazing, and who have never underestimated Jolene’s potential.

And even though the NICU experience put stress on them as a couple, Katie doesn’t know what she would do without having Robbie by her side. They both have extremely different coping styles, with Katie being more verbal about her emotions and Robbie tending to deal with things silently. By accepting one another despite these differences, and having honest communication, they have grown even closer since bringing Jolene home. When Robbie comes home from work after Katie has had a bad day, he is always willing to sit with her and listen to her rant. Katie has also been up front with Robbie that, because she stays home with four kids all day, she needs time that is dedicated to self-care. The third weekend of every month, Robbie watches the kids while Katie spends time alone, giving herself a well-deserved treat, whether it is getting a facial, a manicure, or having her hair done. But most of all, what has helped Katie cope with the fear associated with future uncertainty has been waking up and just focusing on the present day. Rather than ruminating over how life could be, she just goes with how life is in its current form.

As much as Jolene has touched the lives of each member of her family, she has also touched the lives of so many others. Katie has a private group on Facebook where she shares updates about Jolene’s life. Friends who are part of the group have told Katie that Jolene has inspired them to have more compassion and to spend more time with their own children, for time truly is so precious. This whole journey has put into perspective what matters in life and what doesn’t.

Unfortunately, due to the scarring on her uterus from her rupture, Katie subsequently lost two second-trimester daughters within five months of each other. To experience these losses within two years of Jolene’s traumatic birth has filled Katie with deep sorrow, confusion, heartache, and anger toward her body for not keeping her babies safe. Her grieving process is still ongoing, as there is, perhaps, no pain deeper than that of a mother who has just lost a child whom she loved and longed for so deeply. But these miscarriages have, once again, reiterated to Katie how unbelievably grateful she is for her four wonderful children, who fill her life with purpose and meaning each and every day. They have once again shown Katie just how truly resilient and tenacious Jolene is, surpassing any and all expectations, through the hard work she puts in on a daily basis. So, while Jolene might very well be dependent her entire life, she is here, and that is what matters most. Jolene is here, constantly reminding Katie that, even though the world can be terribly unkind, it is also filled with beauty and hope.



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