Name: Danielle Heller
Location: Wisconsin, United States
Child's Birth Year: 2019
Keywords: Maternal Physical Health, Cerebral Palsy, Communication Challenges, Navigating Sibling Relationships
Danielle lives in Southeast Wisconsin with her husband, Jonathan, and their three children, Jeremiah, Elizabeth, and Benjamin. Even though their first two children were approaching the double digits in age, Danielle and Jonathan knew they had more love to give another child. When Danielle found out she was pregnant in 2019, she was ecstatic that she would be able to experience the joys of raising a baby all over again.
Although Danielle’s pregnancies with her two older children had been totally healthy, she was slightly more concerned this time around, as she was now at an advanced maternal age and had experienced birth-related complications in the past. Danielle decided to be induced a day after Benjamin’s due date, as she had done with Jeremiah and Elizabeth.
Once she was induced at the hospital, she received an epidural. Later in the day, Danielle began experiencing extreme pain at the top of her belly, and she was having difficulty breathing. Once her water broke, and the fluid was found to be tainted with meconium, doctors encouraged Danielle to keep pushing. Danielle tried her best to push, but the pain she felt was unbearable. She kept telling everyone in the room that this was not how it was supposed to feel. The doctors turned up her epidural, and after that, Danielle really couldn’t breathe and needed to be put on oxygen. After a while of the labor just not progressing, Danielle finally looked at the doctor, letting her know she just couldn’t do this anymore. She needed a C-section.
As Danielle was rapidly wheeled to the operating room, she screamed in agony. She underwent general anesthesia, later waking up in the ICU, completely alone and intubated. When she woke up, nobody was in the room with her to explain what had happened.
As she read that it was Friday on the board in the ICU room, thoughts of confusion swirled inside of Danielle’s mind: How could three days have passed? It was just Tuesday…it must be a misprint. A nurse finally came in, explaining that it was, in fact, Friday. Danielle was absolutely terrified. She couldn’t feel any sensation in the lower half of her body, and she genuinely thought she was paralyzed from the waist down. She also had no idea where Benjamin was or if he was even alive. She had come into the hospital to deliver a baby, so where in the world was he?
After what seemed like an eternity, Danielle’s husband came to the ICU, explaining bits and pieces of the birth story. She was told that she had been in a medically induced coma for three days, but the good news was that Benjamin was alive. Her son, she was told, was now at a better NICU to receive cooling treatment, since he had suffered from an HIE event due to a full uterine rupture. The doctors suspected that, because Danielle’s D&C scar from her previous miscarriage was a weak spot in her uterus, Benjamin had kicked through it and broke the uterus open completely. It truly was a crazy, rare occurrence that no one could have anticipated beforehand.
Danielle received a picture of Benjamin as he was being cooled, but all of this was so foreign to her. More than anything, she wanted to be by her baby’s side, holding him and letting him know he would be alright. But since Danielle was in critical condition herself, she wasn’t able to see Benjamin for his entire first month of life.
Because Danielle couldn’t be in the NICU, she relied on her husband and parents for second-hand information. It seemed like, each day, Danielle received a fraction of the story instead of the whole picture. During that first month, she only talked to the doctors by phone once or twice. Danielle had no idea what questions to ask since she wasn’t fully informed on all that Benjamin had been going through. The nurses taking care of Danielle often asked her how the baby was and if they could see pictures of him. As a mother, she felt guilty for not having cute newborn photos or knowing any detailed answers herself. Friends and family members also reached out asking Danielle if she needed anything. And while she was grateful to have that support, Danielle didn’t even know what to ask for.
On top of Benjamin’s uncertain health, Danielle had her own medical issues to work through. Her kidneys were failing, so she needed to be put on dialysis. Although no one knew it yet, Danielle had nerve damage from the waist down, so she felt too weak to even walk. After a second surgery, Danielle was eventually transferred to a rehabilitation facility for two weeks to receive physical therapy.
To make matters even more convoluted, when Danielle did receive news, it seemed like Benjamin’s prognosis constantly changed day to day. For instance, when Benjamin came off cooling, the doctors thought he had some neonatal seizures. But fortunately, with phenobarbital, the seizures seemed to be under control. Because of that, and because Benjamin’s first MRI came back completely clear, no one thought that the EEG would show anything too abnormal. But the results of the EEG did not align at all with what one would expect from a baby who had no significant brain damage. Benjamin received a repeat MRI, this time showing massive brain damage all across the board.
Danielle’s husband told her about the meeting he had with the doctors discussing Benjamin’s second MRI results. The doctors said that Benjamin would most likely be quadriplegic, nonverbal, nonmobile, and not have any real independence for however long he lived.
Despite her health challenges, Danielle continued to fight at the rehab facility, because she knew her son needed a healthy and strong mother by his side as he grew older. So, when she heard this devastating news, Danielle couldn’t help but wonder why she was fighting so hard. What was the point, if her beautiful baby boy wouldn’t be with her in this world? In those darkest moments, when she felt like she had no faith herself, Danielle’s entire village of support showed up by her side to pray for her and Benjamin. Her family members and her pastor came to the rehab facility to be there for Danielle in her grief.
Finally, after a month of yearning to see her son, Danielle was able to go to the NICU to meet and hold Benjamin for the first time. Although it wasn’t the first hold Danielle had envisioned, it was so special. The faith Danielle felt she was slowly losing was reignited, and, in that moment, Danielle knew that giving up was not an option.
During her pregnancy, as Danielle had awaited blood test results that would detect whether Benjamin had any chromosomal abnormalities, she vividly remembers Jonathan looking at her, worried, asking, “There’s no way we could handle being parents to a child with a disability, right?” At that time, she didn’t really know how to respond, hoping it was something they would never need to find out. But as Danielle looked into Benjamin’s eyes, right then and there, she realized it didn’t take extraordinary, superhuman parents to raise a medically complex baby…it just took parents who, in spite of the struggles they faced, would continue to advocate for and be present for their baby through it all. So that’s exactly what she did for Benjamin for the rest of his forty-three-day stay in the NICU, and ever since.
When Danielle finally was able to attend a meeting with the NICU doctors, they explained the severity of the damage, putting the option of withdrawing care and withdrawing nutrition on the table. Danielle and Jonathan were insistent that they wanted Benjamin to continue to be fed. They were told that Benjamin wouldn’t be able to eat by mouth, so the next logical progression from an NG-tube was to get a G-tube placed. They pushed for a G-tube surgery right away, but because Benjamin’s case was so severe, the doctors declined. Instead, they wanted to wait it out and see how Benjamin did with the NG-tube at home. Danielle thinks the doctors may have wanted to give her time to change in her mind before making such a definitive decision. They met with pediatric hospice to discuss different options, but ultimately, they decided to take Benjamin home with the NG-tube. And after a month of Benjamin doing better than anyone had anticipated, Danielle and Jonathan finally brought him back to the hospital for his G-tube surgery.
Knowing what she knows now, before she made the decision for a G-tube surgery, Danielle would have advocated more for the speech therapist in the NICU to try to give Benjamin a bottle. But at that time, Danielle didn’t know the potential starting therapy early could have had on strengthening Benjamin’s ability to suck or swallow. Danielle hopes that, in the future, healthcare providers are more proactive in connecting parents to other families who have been through similar situations. Had Danielle received peer support or found Hope for HIE sooner, perhaps Benjamin could have eaten by mouth starting from an earlier age. Perhaps Danelle could have found hope much sooner in the process. She might have realized that, even though the NICU doctors were so negative about Benjamin’s condition, there were other children like him who went on to lead happy lives. Regardless, Danielle doesn’t harp too much on the past, but, instead, is grateful for how far Benjamin has come.
Now, at almost two and a half years old, Benjamin does still mainly feed via G-tube, but he has also been doing well eating purées by mouth. He has a good swallow, and he is really working hard in speech therapy to improve upon his suck. Although he will most likely be nonverbal for the rest of his life, Benjamin has learned how to make noises to express himself in unique ways. Benjamin has many subsequent diagnoses arising from HIE, such as cerebral palsy, epilepsy, a history of infantile spasms, and cortical visual impairment, requiring him to wear glasses. Yet he is still a super content, mischievous, funny little boy, the family loves dearly. His main form of communication is through smiling, and he constantly beams with joy when he interacts with his older siblings. As a social butterfly, he loves listening to and observing people in his environment, finding his own little ways to engage with them.
The family is beginning to find a comfortable new rhythm to life, but it’s definitely been a long and ongoing transition. Especially in the first year, Danielle felt like she was living in panic mode, constantly terrified that the other shoe was about to drop. In the beginning months of Benjamin’s life, Danielle drove herself into a frenzy trying to educate herself about all the intricate details of every potential diagnosis Benjamin might have down the line. Danielle soon came to realize that, while it was great that she was educating herself on Benjamin’s diagnoses, outcomes, and potential therapies, she had to strike the balance of knowing when to put her phone down. Otherwise, she risked missing out on all the precious moments spent with Benjamin in the present.
She would advise other parents to be informed and to push their child to work hard in therapy, but also know when it’s time to take a break. If you or your child is having a tough week, give yourself grace and allow time to rest and recuperate. Sometimes it was hard to not compare her schedule to others, after seeing many families traveling extensively to seek out expensive treatments and therapies. Danielle simultaneously felt immense guilt and feelings of inadequacy as a mother. Was she really doing all that she could? Should she be flying Benjamin across the country, too, in search of the best of the best?
But what Danielle told herself, and what she would tell other parents similarly struggling with guilt, is this: You are enough, even if you don’t travel to the ends of the Earth with your child. You are enough, even if your child is not in therapy all day every day. You are enough, even if you need to take breaks sometimes. For self-care is not something that needs to be earned, but something that is essential.
Now, even though their schedule is still busy with therapy and appointments, Danielle takes moments to slow down and find joy in the little things—whether it means sitting outside and listening to the sounds of birds with Benjamin, watching a show after the kids go to bed, or even something as simple as making herself a warm cup of coffee.
There have been so many moments throughout the journey that fueled her hope. For a long time, Benjamin was constantly in a fog-like state from the phenobarbital and from his infantile spasms. He didn’t react much to anything in his environment, and his personality couldn’t really shine through. But after Benjamin started a medication that effectively controlled his IS and weaned off phenobarbital, he began to make tremendous progress.
One day, Danielle was alone in the church nursery with Benjamin, sitting in serene silence. After Danielle began playing a couple notes on the xylophone, Benjamin began to coo and smile for the first time ever. Danielle was totally shocked. Before that, she thought the only sound she would ever hear her son make was a cry. Never did she expect that he would be able to make happy noises as well. After that breakthrough moment, which Danielle will forever cherish, she realized that, perhaps, all along, everyone had been underestimating Benjamin’s potential. That day, Danielle gained a newfound momentum to keep pushing forward, surviving, and hoping in the face of all of life’s surprises.
While this is far from the life Danielle and Jonathan envisioned when they decided to have a third child, Danielle is so proud of how well the family has adapted to whatever is thrown their way. She is proud that she spreads awareness by being open about her story, so that future HIE families will have access to resources earlier in their journeys than she did. She is proud of how compassionate and inclusive Jeremiah and Elizabeth have become from the experience of having a brother with disabilities.
To any parent who might be struggling with this overwhelming transition, remember this: there will be times where you will feel like there’s no way you can possibly wake up each morning and face the day. But there will also be times where the fog lifts and the light shines through, unveiling a path forward. Let yourself feel all those feelings—the excess of sadness, of happiness, of despair, of hope. If you know your child’s birthday is going to be emotionally difficult, stirring up recollections of trauma, take the day before to wallow in your grief. But the next day, be there, engaged in the present moment to celebrate your child for where he or she is at. Be there to express your unconditional love and make memories you will forever cherish.
Danielle never thought she could be “strong” enough to endure a journey with so many ups and downs. But to make it through, you don’t need to have super strength…you just need to continue showing up, taking it one day at a time and finding those pockets of hope where you can. For while this life may be hard, that doesn’t mean it’s bad. Danielle’s story is one of adversity and struggle. But at its core, it’s the story of a boy who is unbelievably loved and the story of a family who loves an unbelievable boy.
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