Meredith Lee Herold
Jan. 8, 1987 – Sept. 22, 1993
Touched By God Touched So Many
When Doreen was 30 weeks pregnant with our first child in 1987, suspicions were raised on an ultrasound about our daughter’s brain development, and we were referred to UNC Hospital in Chapel Hill for the remainder of the pregnancy. Doreen became the first patient there to have an in-utero MRI. The diagnosis from the MRI and amniocentesis was semi-lobar holoprosencephaly, a type of encephalitis where the brain does not properly form into separate hemispheres. As it turns out, she was missing a fair amount of brain tissue as well. They predicted only brain stem function for our child and that she might not survive delivery and certainly not a year of life. Many doctors were on hand for her induced delivery, which turned out to be quite normal (high APGAR scores). She did not have any of the mid-facial changes often associated with holoprosencephaly.
We returned to UNC Hospital many times the next 6 years (!) for various surgeries and tests, including a peritoneal shunt a few months after birth, hip surgery, a feeding tube and ear tubes. We were involved with the geneticists there to study her case and determine the cause (a chromosomal deletion). A case study was published in the American Journal of Medical Genetics about her in 1990.
Meredith wrote her own book for sure. Although she had few motor skills and could not speak, sit up or even hold her head up, she could smile and laugh (and cry). Getting her to giggle or laugh was just the greatest thing ever. She communicated using her beautiful hazel eyes and was bright and very alert. We would remark that her mission in life was “to ensure that nothing goes unnoticed.”
Meredith had severe cerebral palsy and we were involved for a while with that organization. We eventually moved her to the day program at The Tammy Lynn Center. She would go there each day for care where they would use all kinds of adaptive equipment and devices to stimulate her and to try to strengthen her body and develop at least some motor skills. They provided physical and occupational therapies for her, with the intention of mainstreaming her into public school at some point. All the staff at TLC truly loved and cared deeply for our daughter.
In the spring of 1993 when Meredith was six years old (and our son Matthew was three), we made the most difficult decision of our lives – to move her out of our home and into residency at Tammy Lynn Center. She continued to go to the day program there and then spend the rest of her day in residency. We would visit her often and even take her home on occasion. She seemed to be doing reasonably well, so it was quite a shock when she peacefully passed away in her room a few months later. And of course, we’ll always wonder “What if she had been at home…”
Meredith is memorialized at Tammy Lynn Center with “Meredith’s Courtyard,” an area just outside of Tucker Residence which we were able to transform from dirt into a brick patio, gazebo, fountain, trees, shrubs and flowers. In the days before “Go Fund Me,” it took us three years to raise the funds, design the project and have it constructed. Doreen was pregnant with our daughter Ashlyn when the site was dedicated. The courtyard was meant to be a place for the staff and residents to enjoy some peace and solitude. It was our way of giving back to the center.
Our daughter deeply touched all who knew her – teachers, therapists, doctors, friends and family. Doreen’s sister Daria, a Presbyterian minister, wrote the following about Meredith:
“Meredith was our greatest joy and our greatest sorrow. The deep carving that her life and death left in my heart changed me forever. Because of her I’ve seen a glimpse of the rare treasure of unconditional love. Because of her, my heart is open to loving others in a way I never could have done without her. The gifts Meredith gave us with her life in no way make her death ‘worth it.’ But they make her life a blessing beyond measure. Meredith was, is and always will be, my angel.”
Doreen and Phil Herold