Caroline's Story

Caroline’s Story

This is a small glimpse into Caroline’s life as seen by her family. There are so many aspects to a human life that we realize there are some things we don’t yet know and some things that we never will know or understand but this is where it starts.

Caroline was born on 11-22-1991 after an extremely difficult delivery. The labor lasted approximately 20 hours and resulted in an emergency C-Section due to her heart rate dropping from lack of oxygen. She was born blue and resuscitated. In all likelihood there was some brain damage as a result of the difficult delivery, and this was the start of not only her life but what led to her death.

6 months through 16 years old:
Caroline grew and thrived but did experience some developmental delays with her fine motor skills and gross motor skills. She also had some weakness in the areas of focus and follow through. At times, she displayed some mild OCD & hypochondriasis but nothing seriously concerning. With physical and occupational therapies and parental nurturing she overcame all the developmental delays and even started excelling. She won blue ribbons in track and played varsity tennis for three of her 4 years in high school. She was astute and an entertaining creative writer. She did very well in some academic areas and at least average in others but continued to be weak in the areas of focus, follow through and organizational skills. Teachers suggested possible ADD. We worked with her and tried to help her develop compensatory strategies. She made friends with nice kids and had a good social life but we noticed that she connected with people much better on a one on one basis than she did in groups. There seemed to be a lack of engagement and awareness of what was going on in a group setting. In early high school, Caroline got a job at Genuardi’s grocery store (now Giant Foods) as a check out girl and did well there. This confirmed to us that she could rise to any occasion and succeed despite possible ADD so we were really proud of her and felt that she had overcome whatever possible damage had been done by her difficult delivery. We could never have imagined the tragedy that was waiting right around the corner.

16 years – 24 years old: Beginning symptoms
Around 11th grade, Caroline started butting heads with her parents (mainly her mother) but this is nothing unusual for teenagers. She developed an attitude of inconsideration and lack of concern. Her parents noticed her not following through on obligations and being cavalier about returning borrowed items. Her parents repeatedly pointed out concerns in hopes of curbing the inconsiderate behavior, but the admonishment never resonated with her. She was friendly and good natured but just generally unconcerned about doing what she should do (returning books to the library, returning borrowed items to friends etc.). At times she seemed to be lost in her own thoughts and pre-occupied or daydreaming. The more it was impressed upon her that she should be doing certain things to be responsible and a good friend / family member, the more she avoided contact with her parents. She continued to be pleasantly distracted and started becoming dishonest and secretive. At that point, Caroline’s parents took her to psychologists and psychiatrists in hopes of getting through to her. The psychiatrists thought that she was fine. They told us (her family) to back off and give her some space. It seemed like teen rebellion. It never occurred to us that this was the start of severe mental illness.

Around this time there was also an onset of physical symptoms.
There was a string of health episodes that occurred individually and were attributed to panic attacks or severe anxiety. There were symptoms of dizziness, there were two seizures during blood tests which were associated with vasovagal attacks due to anxiety and most concerning were feelings that her brain was being squeezed. Each time, we took her to her physician and sometimes emergency rooms and specialists. The physicians didn’t have any valuable insight and Caroline always recovered quickly. She bounced back to her old self and kept up with her activities. After the sensation of brain squeezing, we took Caroline to the emergency room and then to a neurologist at Penn. After an MRI, the neurologist spotted a chiari malformation of Caroline’s brain. This is where the brain becomes too big for the skull and causes pressure on the brain. The neurologist didn’t think it was severe enough to warrant surgery and recommended a 1 year follow up; which we did. The neurologist still didn’t recommend surgery and so we thought it was fine. After her death, another neurologist looked at the same MRI and pointed out numerous anomalies that the first neurologist didn’t mention and more importantly some possible reasons of why there were anomalies. This was information that had we been given it initially; it may have made all the difference.

During this tumultuous time, Caroline started working on her Bachelor’s degree at Temple University. She seemed to really like being at Temple and made some friends; mostly males. Her studies went well. As her mother, I always felt as though I wasn’t able to connect with her no matter what I tried. She didn’t seem to be maturing as much as I would have liked but still did well with school and jobs. She even went through an elaborate multi-layered application process to study abroad at the University of Edinburgh in Scotland and spent 6 months there studying and travelling. With all she was accomplishing, it didn’t dawn on us that she had a very serious life-threatening brain condition. During her time in Scotland, Caroline had no interest in contacting her parents unless she wanted money and from what we could tell her behavior was quite wild and risky which concerned us greatly. We continued to try to guide her in safe responsible behavior and sometimes thought there were some small improvements. Due to changing her major and studying abroad, Caroline needed a 5th year to complete her bachelor’s in business administration. The last year at Temple Caroline had an internship that seemed to go well but we saw signs that she was becoming increasingly erratic and pervasively dishonest with us.

24 – 26 years old:
After finishing her degree, she got a very good job at a global company with benefits and good starting pay. We didn’t know this at the time but she walked out of the job after 2 months. She just left and didn’t go back. Caroline moved on to other jobs that she thought might be a better fit but all proved disappointing and she left those as well. She then lost interest in working at all and became obsessively interested in politics and nutrition. She studied both day and night and wrote papers on them and started a blog. Recognizing the seriousness of the situation, her entire family desperately tried to get her help but she was not interested. We called the local crisis center repeatedly and they were of no help because she wasn’t trying to hurt herself or others.

There was conflict at home all the time due to Caroline’s refusal to work or seek treatment and eventually she started leaving home to avoid the conflict. She stayed with family members or friends and eventually she ran out of places to stay and had nowhere to go but would not return home despite us begging her to return. She cut off all communication with family and descended into homelessness. Due to the lack of contact, it took us awhile to figure out how dire her situation was. After becoming aware, we went to court to force her into treatment. The experience was horrible and humiliating to her and painful to us to have to do that to her but we saw no other way to get her help. We succeeded but no treatment worked. There are several possible reasons for this: 1. because her problem was a brain malformation that required surgical treatment rather than medication or 2. Because of her extended period of being delusional it was too late for her to recover or 3. because she was determined to not be helped and to live and die on her own terms. We will never know. Caroline took her own life on July 3, 2018. What we do know is that we love her and miss her and when she left, she took her personality and passion and knowledge, the good and the bad with her. We’ll never be able to fill the hole that she left. All we can do is try to help others who might be dealing with similar situations. This is why we’re writing her story. There is so much more to this but we can’t fit it all here. We would be happy to discuss it with anyone who wants information or has concerns of their own.