Patient Story: Ackie and David




Ackie and David

Dr. Susan Verghese, Our Anesthesiologist and Advocate

My son David was a fighter in the true sense of the word.  David entered this world 10 weeks early with a variety of health problems including: Hydrocephalus (increased intercranial pressure due to excess spinal fluid), Agenesis Corpus Callosum (absence of the midline to the brain), Neuro Fribromatosis Type 1 (genetic disorder that has the potential to result in cafe aulait skin markings and the growth of tumors along nerves in the skin, brain, and other parts of the body), and Gastro Esophogeal Reflux (GERD), among others.  David also experienced severe pain and migraines and much reluctance to bear weight for the first four years of his life due to an undetected tethered spinal cord.  He suffered respiratory issues due to the GERD and the need to lay down to relieve spinal pain caused bythe tethered spinal cord.  The soft spot on his head also didn’t close naturally.

My son had to enter the world fighting for his life, and remained in that mode throughout nine different surgeries and  10 1/2 years on earth.  He had an amazing ability to find joy in song and used his love for music to take his mind off of his pain and as a means of communication.  Ultimately, the doctors identified David’s spine condition and determined it as the most pressing issue, which they recommend to be addressed first.  David had a tethered spinal cord, which meant his spinal cord was attached to his tail bone by fatty tissue.  Dr. Susan Verghese was David’s anesthesiologist for the spine procedure, and though we didn’t know it at this point, she was to become one of his greatest advocates. 

While the surgery was a success, David had severe complications including coding during his recovery period on the floor because of vomiting and choking on his vomit.  His heart and breathing stopped.  He was revived and moved to intensive care.  Dr. Verghese came to visit him, and met me there.  She gave me guidance and her recommendations for addressing his needs in the upcoming surgeries.  Later, once David was strong enough for the next surgery, Dr. Verghese served as the anesthesiologist on his next surgery and every surgery thereafter.

I am grateful for the time we had with David, and I pray he is enjoying his next life.  I am also grateful to the talented and caring medical professionals who helped improve David’s time on earth and respected his love for music and life itself.  I hope that our family’s experience can reassure other parents preparing children for surgery.  Do not hesitate to learn from each physician and ask questions.  Inquire of your anesthesiologist, asking him/her to help you sort out reasonable expectations for your child's procedure and recovery.  Be sure to stay with those physicians who have a special talent of connecting with families, they will be your greatest asset and source of peace as you help your child prepare as best you can for the surgery.

Dr. Verghese is a true professional, and our family is grateful for her commitment to her profession and her extra commitment to us as patients and families.

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