Help Josephine Tobin Thrive with Williams Syndrome
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Josephine was born October 30, 2020 weighing 5 lbs, 15 oz. Although she was initially quite fussy, she seemed to breastfeed well and was physically healthy, so we were discharged 24 hours after her birth. At home, Daniel and I learned what life was like with a "colicky baby." The pediatricians wondered about reflux and breastfeeding difficulties, but still Jo seemed healthy when assessed by her providers. However, by 2 months, she was falling off her growth curve,
causing higher levels of concern. When at 3 months, she started losing weight, Josephine and Erin were admitted to the hospital.
Upon being admitted, an NG tube was immediately placed to ensure adequate nutrition. Data collected at the hospital verified her breastfeeding was ineffective, and her strong oral aversion meant that bottles were not an option. During the two-week hospital stay, Josephine’s case confounded all involved: pediatricians, speech language pathologists, neurologists, gastroenterologists, occupational therapists, otolaryngologists, dermatologists, nutritionists, and
geneticists. At home, Daniel did his best to take care of Abe, work full time, and attend as many of the doctors’ visits by telephone as possible (since Covid-19 protocol at the hospital meant that he and Erin were not allowed to be with Josephine simultaneously). When discharged after two weeks, we still had no diagnosis but Josephine’s weight gain was encouraging enough to allow
her to go home.
At home, the intensity of taking care of Josephine was immediately overwhelming. NG tube feeds occur every three hours which entail breastfeeding, holding Jo upright for at least 90 minutes after each feed to reduce vomiting, pumping breast milk, soothing, and often cleaning up
vomit anyway. Soon after coming home, we received the devastating news that Josephine has a rare genetic disorder called Williams Syndrome, which often causes multi-system chronic diseases, learning disabilities, behavioral challenges, and developmental delays.
Since being home, we have been on an unending rollercoaster. On the one hand, Josephine continues to gain weight and meet many developmental milestones: it has been gratifying to witness her becoming sociable and engaging. On the other hand, we continue to deal with medical issues (severe GERD, NG tube feedings every three hours, titrating medications, unexpected and frequent trips to the ER for NG tube complications, and her inability to take a bottle). Our schedule leaves us exhausted due to Josephine’s regular overnight NG tube feedings,
her general irritability, and our constant in-person, virtual, and telephone conversations with healthcare providers, developmental specialists, social workers, health insurance representatives, medical durable supply companies, and so on. The current state of affairs has affected everyone. Abraham, our 5 year-old son, is understandably frustrated and often feels like he doesn’t get sufficient attention from his parents. Erin has taken a leave from her job with a great deal of uncertainty regarding when she’ll be able to return. Daniel has had to drastically reduce his work hours as he too is on full-time caretaking duty.
Despite the uncertainty, there is also a great deal of hope and inspiration. We have been humbled by the outpouring of love and support from our friends and family, both near and far. As we learn about Williams Syndrome, and get connected to resources and networks, we now know that people with Williams Syndrome can be quite affable, compassionate, and musically inclined. We
have an incredibly competent team of healthcare providers supporting Josephine’s health. And yet, we are still confronting enormous challenges: a healthcare system that is nearly impossible to navigate, insufficient hours in the day and week to make it all work, sleep deprivation, and financial strain.
Although we have always prided ourselves on being a hard-working independent family, right now we are leaning into one of life's hardest lessons - asking for and accepting help - even though it feels uncomfortable to do so. Our long-term plan, so that we can establish a new sustainable normal, is to find a full-time nanny for our family, and we would appreciate any contributions toward this goal.
All our love,
Erin, Daniel, Abraham, and Josephine
causing higher levels of concern. When at 3 months, she started losing weight, Josephine and Erin were admitted to the hospital.
Upon being admitted, an NG tube was immediately placed to ensure adequate nutrition. Data collected at the hospital verified her breastfeeding was ineffective, and her strong oral aversion meant that bottles were not an option. During the two-week hospital stay, Josephine’s case confounded all involved: pediatricians, speech language pathologists, neurologists, gastroenterologists, occupational therapists, otolaryngologists, dermatologists, nutritionists, and
geneticists. At home, Daniel did his best to take care of Abe, work full time, and attend as many of the doctors’ visits by telephone as possible (since Covid-19 protocol at the hospital meant that he and Erin were not allowed to be with Josephine simultaneously). When discharged after two weeks, we still had no diagnosis but Josephine’s weight gain was encouraging enough to allow
her to go home.
At home, the intensity of taking care of Josephine was immediately overwhelming. NG tube feeds occur every three hours which entail breastfeeding, holding Jo upright for at least 90 minutes after each feed to reduce vomiting, pumping breast milk, soothing, and often cleaning up
vomit anyway. Soon after coming home, we received the devastating news that Josephine has a rare genetic disorder called Williams Syndrome, which often causes multi-system chronic diseases, learning disabilities, behavioral challenges, and developmental delays.
Since being home, we have been on an unending rollercoaster. On the one hand, Josephine continues to gain weight and meet many developmental milestones: it has been gratifying to witness her becoming sociable and engaging. On the other hand, we continue to deal with medical issues (severe GERD, NG tube feedings every three hours, titrating medications, unexpected and frequent trips to the ER for NG tube complications, and her inability to take a bottle). Our schedule leaves us exhausted due to Josephine’s regular overnight NG tube feedings,
her general irritability, and our constant in-person, virtual, and telephone conversations with healthcare providers, developmental specialists, social workers, health insurance representatives, medical durable supply companies, and so on. The current state of affairs has affected everyone. Abraham, our 5 year-old son, is understandably frustrated and often feels like he doesn’t get sufficient attention from his parents. Erin has taken a leave from her job with a great deal of uncertainty regarding when she’ll be able to return. Daniel has had to drastically reduce his work hours as he too is on full-time caretaking duty.
Despite the uncertainty, there is also a great deal of hope and inspiration. We have been humbled by the outpouring of love and support from our friends and family, both near and far. As we learn about Williams Syndrome, and get connected to resources and networks, we now know that people with Williams Syndrome can be quite affable, compassionate, and musically inclined. We
have an incredibly competent team of healthcare providers supporting Josephine’s health. And yet, we are still confronting enormous challenges: a healthcare system that is nearly impossible to navigate, insufficient hours in the day and week to make it all work, sleep deprivation, and financial strain.
Although we have always prided ourselves on being a hard-working independent family, right now we are leaning into one of life's hardest lessons - asking for and accepting help - even though it feels uncomfortable to do so. Our long-term plan, so that we can establish a new sustainable normal, is to find a full-time nanny for our family, and we would appreciate any contributions toward this goal.
All our love,
Erin, Daniel, Abraham, and Josephine
Organizer and beneficiary
Kate Hewitt
Organizer
Hinesburg, VT
Erin Bingham
Beneficiary
