It was truly a pleasure to have Ursula share her story with me, not just because she is my friend, but because she is one of the most inspiring people I have had the privilege of knowing.
Ursula had a c-section 4 years ago with her son, Sean. At 6 months pregnant, she was diagnosed with a high risk pregnancy and had to undergo weekly stress tests throughout her prenatal period. “During one of those tests, Sean’s heart rate dropped leading to an emergency c-section.”
At just two weeks old, baby Sean was diagnosed with MPS (Mucopolysaccharidoses), a rare condition caused by the absence of an enzyme required for the body’s ability to regulate fluid. As a result, fluid stores in the body and organs. Doctors found that Sean had an enlarged liver in addition to vision and hearing impairment. He also has required two separate spinal surgeries in his toddler years.
Ursula and her then-husband were called in by doctors and hospital staff when their baby was only two months old. They explained that Sean would most likely pass away in the immediate future and they urged the couple to prepare themselves.
They were given the two options that all parents fear: allow Sean to remain in the hospital with hospice care to ease his passing or take him home with in-home hospice care.
It was at that moment that Ursula, a very spiritual person, made a clear decision, without a moment’s hesitation. She intended for her son to live and decided to go home with him and put her faith in God.
Although the doctors and other medical staff did not agree with her decision, they allowed her to take her son home.
At the time, Sean was the only baby in the state of Michigan to have MPS. Shortly after, New York University contacted her with a promising new experimental drug that they were researching. Although it did not promise reversal of MPS, previous testing on older pre-teen aged patients showed a marked improvement in their quality of lives.
Already in the midst of a divorce, Ursula picked up and moved Sean to the New York where he was only the 3rd baby to be included in the trials.
Today, his liver and spleen have decreased in size and he is dramatically more aware and alert. He still travels back and forth between medical facilities in both Michigan and New York where he is consistently hailed as a medical miracle. Even the professionals who worked with Sean at birth and once truly believed he would not survive past a few months of age are amazed by his results.
Ursula beams when she talks about Sean. She explains that it’s not just his outstanding progress, but “he is so happy. He only cries when something is really wrong.” Even as an infant, when the doctors inserted tubes into his throat, which is incredibly painful and requires pain medication, “Sean just smiled.”
Although we were able to walk away from the interview with so much inspiration and awe for Ursula, she still stuck to the basic interview template we gave to all our c-section Mommies! Amazing. She explained that her c-section itself was fairly easy.
She even offered advice to new c-section Mommies. After experiencing the itchiness and discomfort that so many feel as incision site, Ursula found that leaving it alone was for the best. “It seems like it is coming from the inside so you NEVER feel relief no matter how much you scratch!”
She adds that it will eventually go away if you don’t irritate it. Many c-section Mommies (like myself) find that we scratch the irritated scar area when we aren’t conscious of it, like in our sleep. While it seems like immediate gratification of an itch, in the long run it can interrupt the healing or worsen the incision’s scarring. Good advice, Ursula!
Ursula is a living testament to the power of a Mother’s love and embodies patience, perseverance and all of the qualities I think a Mom wants to have. Thank you for sharing your and Sean’s truly remarkable story!