From the Heart
Twenty years ago, we saw the very first photo of our fourth daughter. While our other daughters are also adopted, this was our first adoption from China and the first one we had chosen to adopt a child with correctible special needs. Her photo had been taken nearly a year before, and it was evident she had a repaired cleft lip. She had bilateral cleft lip and palate; only the initial surgery to repair the lip was complete. We planned to travel to meet her in 6 short weeks, and we didn’t know anything about cleft lip and palate. July is Cleft Palate and Craniofacial Awareness month, so I’d like to share what I’ve learned and how you can transform a life of a child with an orofacial disorder.
Here’s what I learned in those few weeks before we traveled and in the past two decades. Cleft lip and palate fall in the category of orofacial disorders and can be either syndromic or non-syndromic. If the condition is part of a syndrome, it may also affect organs such as the heart or the GI system. Treacher Collins Syndrome is one such disorder; PHF has provided access to medical care for two children with that syndrome in Mexico. The rate of cleft in China is around two births per 1000 live births and has been stable for the past 30 years. A child with an orofacial cleft typically needs multiple surgeries for survival and even more intervention from specialists to thrive. Twenty years ago, only 5% of the children born with this type of cleft in China survived until their fifth birthday.
In our city, the community health board created a program to support children with cleft and their families. All the necessary medical professionals gather to evaluate the upcoming medical needs of a child. In a single half-day clinic day, a child will see an ENT doctor, an audiologist, a dentist, an orthodontist, a speech therapist, a geneticist, and more. The professionals discuss the upcoming medical needs of the child and coordinate the care at the end of the day. This makes it much easier for the family to navigate the complex care. Many other cities, such as Philadelphia, Kansas City, and Chicago, also have teams. Like many people with cleft lip and palate, our daughter required more than a dozen surgeries and many years of speech therapy.
In China, a family must completely pay for hospital care and surgery before the treatment begins, and a family member must stay at the hospital with the child. Even harder, families in Mexico and China must travel to cities with larger hospitals for surgeries. And often, families do not know what is medically needed for children with craniofacial disorders. Your donations to our medical fund transform the lives of children with cleft and related conditions in China and Mexico.
In the past year, your contributions have provided access to medical care for Matias and Pedro in Mexico; both needed help with travel expenses, and the physicians donated their services. Our friends at Red de Ciudadanos Mérida also supported these boys. You can read their stories in the February Heartbeat issue or online in our Stories of Hope. You can read about Clara in this issue – Clara has a cleft lip and palate and a congenital heart defect and lives in a Healing Home in China.
One Liter of Milk Equals One Smile
Look at these smiles! Philip Hayden Foundation partners with Red de Ciudadanos de Mérida to deliver over 1000 liters of milk every month to impoverished families in the area around Mérida, Yucatán. Would you consider providing $35 each month to deliver 35 liters of milk to nourish a child? Your donations for humanitarian aid today will provide milk for growing children. Your compassion for vulnerable children is inspiring – thank you!
Updates on Children in Mexico with Medical Needs
Update on Jesús David and His Brother Didier
Three-year-old Jesús suffered third-degree burns over 90% of his body in a fire that destroyed his family’s home in Mérida, Mexico. His father died rescuing Jesus and his little brother, Didier, from the burning structure. Two-year-old Didier had a broken leg, requiring surgery, and is now staying with relatives south of Mérida. Jesús is now in the burn unit at the La Raza Medical Center in Mexico City, undergoing treatment, including respiratory support, antibiotics, pain medication, and hyperbaric chamber treatment.
Jesús will stay at the hospital for at least six months for burn treatment and rehabilitation. He will not be able to have skin grafts because there is not enough undamaged skin. He has been receiving hyperbaric chamber treatments, but Jesús will also need joint surgeries to recover mobility; muscle and tendon contracture is common with severe burns. Please pray for these young boys and their Mama. Your donations to the PHF medical fund will help Jesús receive life-saving treatment.
Update on Emma
Two-year-old Emma began a six-week chemotherapy treatment for liver cancer on April 24, partly funded through donors to the Philip Hayden Foundation medical fund. On June 3, Emma had a PET scan, which thankfully showed incredible success – a remarkable 35% decrease in the tumor size! Emma’s physician ordered a two-week rest period, and then she will have a short burst of intensive chemotherapy with the same medication. At the end of this treatment, Emma will have another PET scan. If the tumor is sufficiently reduced in size, Emma will be able to have liver surgery instead of needing a liver transplant. Emma is only two years old, which is very hard for her and her family. Please keep praying for Emma, her family, and her healing. Thank you for your donations to PHF, which are transforming lives!
Update on Adoption in China
When the Covid-19 pandemic closed China to travel, more than 400 families were matched with their children. These families have waited over three years to be united with their children. Many of these children have disabilities and will be able to get more comprehensive treatment in the US and, more importantly, will be part of a forever family. China has begun approving visitor visas again, an indicator that the world is returning to pre-pandemic operation. Please pray that travel for families adopting will be approved soon.