Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy


Abigail’s Story: Little Llama Lu

April 30th, 2022  | HIElights of Hope

Name: Abigail Purser

Location: Idaho, United States

Child’s Birth Year: 2020

Keywords: New to HIE, Home Birth, Super Siblings

Abigail lives in Idaho Falls, Idaho with her husband, Kendall, and five children. Her two boys are fourteen and twelve years old, while her three girls are eight, six, and one. Because Abigail’s pregnancies and hospital deliveries with her four older children were all uneventful, Abigail never imagined anything would go wrong during the delivery of her fifth child, Luthien (also known as “Lu”). With Lu, Abigail chose to have a home birth. Not only were there many visitor restrictions at the hospital due to the pandemic, but, as an eighth-grade math teacher, and someone who does martial arts every evening, Abigail wanted the flexibility of a midwife coming to her house to work around her busy schedule.

During Abigail’s pregnancy with Lu, she noticed that she was more anxious than she had been during her previous pregnancies. Abigail felt comfortable being vulnerable and sharing all her worries with her midwife. Even though testing positive for group B strep (GBS) is extremely common during pregnancy, Abigail never had GBS with any of her other children. She worried that, because of the GBS, Lu was at risk to be born with GBS-associated disabilities, such as blindness and deafness. But through all of these anxieties, Abigail was grateful for her midwife, who reassured her that, no matter what happened, she would be okay.

Two to three weeks before Abigail’s due date, she felt decreased movement from Lu. Because her primary midwife was out of town, another midwife in the community came to the house to make sure everything was fine. Lu’s heart rate sounded good and fluctuated as is typically expected. Abigail sighed a breath of relief, and in the evening four days before Lu’s due date, she went into labor.

The first thing Abigail noticed was that she was in a lot more pain than she had felt with her four previous children. She still wasn’t too worried, thinking it was because she was much older this time around. Lu was finally born in the middle of the night, at 1:36 a.m. on July 25th, 2020. When Abigail, sitting in a birthing pool, pulled Lu up from out of the water, she knew in her gut that something had gone terribly wrong. Lu looked lifeless, with a sickly pale gray complexion. She didn’t move or cry at all, and her head was extremely floppy. While two midwives and Kendall focused on resuscitating Lu, Abigail’s two sisters sat by her side, holding her hand and saying words of encouragement. Lu was only intermittently taking breaths, so she was rushed to the hospital, accompanied by her father. Abigail joined a little later, after she cleaned up from the traumatic delivery.

Abigail made it to the NICU within an hour of Lu being born, but even once she arrived, Abigail wasn’t really able to see Lu. All she saw was the chaos of everyone standing around her daughter as they attempted to stabilize her. As Lu was being intubated, all Abigail and Kendall could do was sit off to the side and pray. Pray that their family of seven would remain a family of seven. Pray that Lu wouldn’t spend the rest of her life fighting just to breathe her next breath. Pray that this surreal disaster would soon be over.

Since it was the middle of the night, Abigail wasn’t quite ready to wake up her parents to tell them that their newest granddaughter had been born. She decided to let them sleep since there were no major updates, but not having them there added to the loneliness of those early hours even more.

When the neonatologist finally approached Abigail and Kendall, Abigail felt a sense of hope that her prayers had been answered. But upon hearing the words, “She’s just really sick. I wouldn’t leave her bedside tonight if I were you,” all that excitement was suddenly replaced by an overwhelming sense of despair. Even though Abigail thought of herself as a pretty experienced mom, this was all unventured, terrifying terrain. At this point, all she was told was that Lu had suffered from a hypoxic injury, which was similar to drowning. Abigail had no idea what to make of this information—was the injury just a “once it’s over, it’s over” type of thing, or were there going to be long-term effects?

A little later into the night, once Lu began the cooling treatment, Abigail was informed that Lu would need a blood transfusion because her organs were starting to shut down. As Abigail sat next to Lu, who was connected to the ventilator, EEG leads, and IVs, she felt like her heart was being obliterated. Her daughter’s health was deteriorating in front of her eyes, but all Abigail could do was touch the little finger of her freezing baby girl.

After an immensely difficult first night, Abigail and Kendall made the five-minute drive back home to get some rest. For the next few days while Lu was being cooled, they fell into a rhythm of going to the NICU twice a day—once in the morning for rounds and once around bedtime. At home, the other children saw the toll the constant back and forth from home to hospital was taking on Abigail and Kendall and understood the seriousness of the situation. Abigail and Kendall didn’t try to put on a brave face or hide any information from their children. Instead, they had honest conversations with them, relying on their collective faith to carry them through this trying situation.

In the evening the day after Lu was born, Abigail went to the NICU feeling powerless as a parent. What could Abigail say to her sweet Lu, when she didn’t know whether her baby girl would live or die? She couldn’t seem to find the right words, and she felt silly just sitting there trying to talk to a baby who was experiencing so much discomfort. Instead of worrying in silence about how Lu’s health would progress, Abigail and Kendall decided to start their own heartfelt tradition of reading to Lu before bedtime. That night, Kendall decided to read the tale of Beren and Lúthien from The Lord of the Rings, which is where Lu’s name came from. In addition, llamas had become Abigail’s favorite animals, so she read her little Llama Lu a book called Llama Llama I Love You. Abigail realized that, even if Lu wouldn’t remember this, this would be a precious memory that she, as a mother, would hold onto forever.

As Lu came off cooling, her health started to improve, and Abigail and Kendall started going to the hospital every three hours to help out with her care and feeding. Abigail is grateful to the nurses for including them in Lu’s care and allowing them to feel like parents in unusual circumstances. The first few days after Lu was rewarmed, the nurses let Abigail and Kendall hold Lu’s feeding tube and measure out the milk. Once Lu started taking bottles, the nurses empowered Abigail to take charge of feeding Lu or changing her diapers. When Abigail was worried she would mess things up by tangling the IVs if she held Lu, the nurses reassured her, saying, “Your job as a mother is to love, hold, and take care of your baby. Our job is to help support you in your role, and if that means untangling IVs, we can do that.”

Throughout the NICU stay, Abigail was consumed by incessant thoughts of self-blame: Was it her fault that Lu was suffering? Was it because of the group B strep, and if so, could she have done more during her pregnancy to prevent GBS? If she had chosen to give birth at the hospital, would Lu be fine right now? Abigail is so thankful to the doctors and nurses, who never once judged her for her decision to have a home birth. They also explicitly let Abigail know that, while the cause of the HIE event remained a mystery, it was in no way, shape, or form related to the group B strep diagnosis. Because of their kind words, they helped Abigail work through her overwhelming feelings of guilt. As horrible as those NICU days were, they were made better by the healthcare workers who didn’t just view Abigail as a patient’s mother but took the time to get to know and support her as an individual.

During one of the most exciting days in the NICU, Kendall and Abigail showed up to find Lu wearing a onesie. They were ecstatic to see Lu with clothes on for the first time, as she was looking more and more ready to go home. On the day of discharge, as Abigail and Kendall stood in the NICU for their last rounds, the neonatologist could tell they were scared and hesitant to take Lu home. Knowing that Lu was their fifth child, the neonatologist shared these words of advice: “She is susceptible, but not fragile. Treat her like your other children, play with her, and work with her.” This reassured Kendall and Abigail that they knew how to best love and care for their baby.

They finally brought Lu back home after fifteen days in the NICU. The other kids were overwhelmed with excitement to finally see their baby sister, especially since they had not been able to visit the hospital due to COVID restrictions. It was easier to explain what happened to their two older boys, but because her daughters were so young, Abigail just told them they would need to be more gentle with Lu.

Having Lu home that first night was magical. When Abigail woke up every three hours throughout the night to pump her breast milk, she realized she was no longer alone, with only her worries about Lu’s future to accompany her. Now, she had her night-owl baby to snuggle with and talk to.

That first night home, Abigail will never forget her now twelve-year-old son coming into the room and telling her that he could take Lu for a little bit so she could rest. It was just so cute and wholesome that he understood Lu needed extra attention. Since then, Lu’s older siblings have been amazing with helping out. One day, they were all eating at the table, and Lu seemed to stare off into space with her eyes glazed over. Abigail suspected it may have been a seizure, so she taught all the children the signs to look out for in case Lu had one again. There have been a few scares when the boys thought Lu’s expressions might be indicative of seizures, but for now, Lu is doing fine.

As the months have passed, Lu has developed the funniest personality, and she has joined in on the chaos of the larger family. She laughs and giggles, but if anyone ever tries to take the camera out for a picture, she refuses to smile. She loves going on family walks and riding along in the trailer attached to the back of Abigail’s bike. Lu just rolls along with things, and she is now beginning to stand up, something Abigail didn’t know if she would ever be able to do.

Because Lu is so young, there’s so much about her future development that is unknown. But in spite of this uncertainty, Abigail tries to take it day by day. She finds that this has been easier for her since Lu is her fifth child. For instance, if Lu didn’t hit a milestone she was “supposed to” by two months old, Abigail didn’t freak out because she has seen from experience that each child will do things at his/her own pace. Abigail has also learned to live by the philosophy that the only thing worrying accomplishes is making you suffer twice—once before what you’re worrying about happens, and a second time if it does actually happen. For her, worrying detracts from the ability to find pleasures in the daily joys of being Lu’s mother. What helps Abigail hold onto hope is taking a deep breath and reminding herself that Lu is who she is, and she will be who she will be. Just because Lu’s challenges started earlier in life, that doesn’t take away from who she is or make her any less worthy. In fact, if anything, this journey has shown to the world how truly resilient, tenacious, and wonderful Lu is. No matter what the future holds for Lu—whether she goes on to have learning disabilities and needs accommodations at school, or whether she stops meeting those developmental milestones—Abigail has hope that Lu will find ways to adapt to her circumstances.

Even though Abigail tries her best to not let her anxieties about the future interfere with her daily life, she has bad days where she feels overwhelmed. In those moments, she is grateful for Hope for HIE. The community has given her a safe space where she can openly express the grief she feels over losing the future she had always envisioned for Lu. Even though Lu is doing well—she is mobile, she has good control of her head and her trunk, and she is meeting the expected milestones—Abigail remains involved because she wants to give back to a community that helped her through her darkest days. She hopes to be supportive of other HIE parents who may just be beginning their journeys. And in many ways, she, too, is in the beginning stages of the HIE journey. If Lu ever does develop problems, such as motor skill issues or learning disabilities, it gives Abigail peace of mind to know she has a safety net to fall back on for guidance and encouragement. The community has not only empowered Abigail as a mother, but it has empowered her to be the best teacher possible. From hearing the stories of parents in the community who have felt invalidated during the process of creating individualized education plans (IEPs) alongside teachers, Abigail will go into her future IEP meetings with a newfound mindset. She will be intentional in making sure the process is as collaborative as possible, acknowledging that parents are the experts on their children, with invaluable insight to offer.

All in all, Abigail just feels proud to be Lu’s mother, and she feels proud that, as a family, they are all able to come together to support one another. Even though Lu may present as unaffected—she crawls around, laughs, talks, wants to play on her mother’s phone, loves playing in water, and steals her siblings’ food—HIE is a part of her. And it is a part of the entire family, of their collective story. By sharing this collective story, Abigail aims to highlight that, with HIE, there are many different outcomes. Perhaps others can find hope that possibility exists within the spectrum. And by sporting her Hope for HIE T-shirt at school, Abigail aims to show others that those letters represent something. They represent a journey of uncertainty, of loss, and of grief. But they also represent a journey of adaptation, of community, and of ever-present hope.



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