2021 July Heartbeat
From the Founder
Cleft lips and palates are rather common congenital facial disorders worldwide, and in China, one out of every 600 babies are afflicted. Through the years, we’ve been able to provide thousands of surgeries to orphaned children who suffered with these abnormalities. We began in 1996 when we partnered with the China Charity Federation to operate on orphans of all ages throughout the country.
In recent years, for the children who lived with us at Shepherd’s Field Children’s Village (SFCV), we partnered with the Third Beijing University Hospital. There we worked with Dr. Xie and his team of physicians and nurses, who are the best in the country. We’ve cooperated with them for more than a decade in a very successful partnership.
The surgery to repair a cleft lip and/or palate is a relatively simple procedure compared with other conditions, like heart defects. However, many kids in China have no way to get the operation because their parents must pay the entire cost in advance. Others may live in very remote areas, which restricts their access to hospitals that provide surgical care.
Surgery is Just the Beginning
Our goals for kids with cleft lips and palates include improving their ability to eat, speak and hear, and to achieve a normal facial appearance. The closing of the lip and palate are the first steps, and by far the most dramatic change for a child. However, their surgeries and treatments don’t stop there. Periodically, children need palate expansion, dental surgery and orthodontics, and even realignment of the upper and lower jaws. Tonsils and adenoid removal may also be necessary to improve sleeping. It’s a long road of costly doctor visits, operations and therapy visits, which are beyond the means of most families in China.
When you donate to our Medical Fund, needy children can receive the surgical transformations and follow-up care they desire and need. For more information on how you can help, go to [email protected].
The foundational purpose of the Philip Hayden Foundation is to enable vulnerable children to first have hope, then to transform their hope into new lives of freedom and beauty.
Eric Carle, loved for his children’s books with imaginative collage artwork, recently passed away. I spent many hours with my children reading his books and admiring the artwork. But this quote from Eric Carle reminds me of the vulnerable children and orphans we help in China. “The Very Hungry Caterpillar Story is about hope. Children need hope.”
Children Need Hope
For a child with disabilities, even ordinary things can be hard. This can be even more true in an orphanage. Without opportunities for success, how can a child be proud of themselves? These precious kids often live without hope. And without hope, a child cannot look to the future.
This is our mission: Providing medical care, therapy, and education to at-risk children with disabilities in China, transforming hopelessness to lives of dignity, fulfillment, and value.
As a Partner in Hope with PHF, you provide hope to orphans with compassion. Thank you!
Did You Know?
The congenital disorder known as cleft-related can be cleft lip (CL) only or cleft palate (CP) only. It can also be both cleft lip and palate (CLP). The palate is the roof of the mouth, and a cleft is a split – or opening – that occurs when an unborn baby’s facial structure doesn’t quite meet during development. Usually this is an isolated condition. But, it can be part of a group of disorders affecting the organs near the center of the body, like the heart. Children born with cleft lip and palate are often undernourished, because they have difficulty eating. They can’t suck from a bottle like a typically developed baby, and need to use a special bottle. These are better, but even then, it takes much longer for an infant to eat. In addition, there is a high risk of ear infections or pneumonia.
Some countries, like China, have a higher number of cleft-affected babies than other parts of the world. However, even within China, some provinces – like Chongqing – have many more cases than others. Throughout China, nearly 1 in 600 live births are cleft affected.
Cleft Lip Repair Surgery First of Many
The first surgery to repair a child’s lip usually happens around 10 months of age, and the initial palate surgery repair occurs before the age of three. Some provinces have more access to surgeries than others, and yet the cost may still be too high for some families. Between 2001 and 2011, Smile Train a nonprofit medical group, provided more than 17,000 cleft repairs in China. The Philip Hayden Foundation cared for many cleft-affected kids through our 25 years, providing surgeries and care. Thankfully, most were adopted.
The vast majority of cleft-affected kids have more than six surgeries, and require extra dental work, orthodontia and speech therapy. Most of the time, however, there are no other related health issues. In many areas in the U.S., cleft lip and palate teams of medical experts work together to plan cohesive medical care for the community. Children’s Hospitals and Shriner’s Hospitals are great resources – or check in your local area! Kids with cleft lip and/or palate are waiting for their Forever Families too! Maybe one is waiting for you.
UPDATE! Gratitude, Surgeries, and Time at the Beach
Jamie spent many years at Shepherd’s Field Children’s Village (SFCV), and while there, donors like you provided for his surgeries, therapy and loving care. We send a huge Thank You to all of you!
It’s hard to believe that he’s has been home for a little over four years now, and just finished second grade. He’s in the Autistic Support Classroom at our local elementary school, and has grown so much in the last few years. I’m pretty sure he’s his teacher’s favorite. 😊 Not only is Jamie doing really well in school and learning a lot, but he’s also still in the process of going through his surgeries for cleft lip and palate.
Cleft Palate Medical Teams Support Families
The surgeons in China performed multiple operations, and did an amazing job with the repair of his large bi-lateral cleft and palate opening. Once he was home and we saw the plastic surgeon at Children’s Hospital of Philadelphia (CHOP), I learned that fistulas (small openings in the palate) are common even after the palate is closed. They discovered that Jamie had three small fistulas, two of which have now been closed.
On June 3, Jamie and I went to CHOP for his annual Cleft Team Day, where we saw multiple specialists related to Cleft Lip and Palate. We had visits with Dr. Taylor (plastic surgeon), the orthodontist, speech therapist, CL/P nurse, audiologist, and psychologist. During this visit, Dr. Taylor decided to close Jamie’s remaining fistula so it won’t affect Jamie when they go to expand his palate and do his bone graft surgery. The opening could potentially affect his speech and eating, and is currently affecting his breathing. If the hole continues to grow, it could cause more issues with breathing, sleeping and eating down the road, and make future surgeries more difficult.
After Jamie’s surgery in September, we’ll take the next steps to prepare for his bone graft, where they’ll take bone from his hip to seal the holes in his mouth. A few years after that, he will get rhinoplasty (a nose job!), and then a few more surgeries once he’s almost done growing. PHEW!
Cleft-Affected Children Thrive with Coordinated Care
Having a child with cleft lip and palate was a lot more involved than I ever knew. I’m so grateful for the amazing team at CHOP, and that we’re so close to one of the best Children’s hospitals in the country. Dr. Taylor is always reassuring and so kind to Jamie and me. Jamie continues to amaze me with his strength and resiliency, especially after each surgery. His nurses always love him and are surprised to see how well he handles everything. He takes meds like a champ, and even surgery on his mouth doesn’t stop him from eating. I don’t think I could handle all of this as well as Jamie does. As a result, I’m a very proud mama!
In the meantime, as we await surgery we’re looking forward to some days at the beach (one of Jamie’s favorite places), lots of playground time, and a fun, relaxing summer during which we will celebrate Jamie’s 10th birthday! – Chrissy Kelly
An Open Letter from Madison Adoption Associates
Philip Hayden Foundation has been partnering with Madison Adoption Associates to find Forever Families for orphans in China. Unfortunately, the process in China has recently changed, and you will need a completed dossier to be matched with a waiting child. Here’s what MAA is sharing:
Dear China Waiting Families,
In our continued effort to be fully transparent with all of our families in the China program, we are writing to let you know that we learned today that CCCWA is halting the issuance of any new pre-approvals. Our understanding of this is that it will only impact the families who were interested in pursuing a specific child on the shared list, as we will not be able to lock and submit and receive PAs for those cases. We are continuing to gather information, and will share any new information with you all as we receive it.
In light of this new development, we, as an agency, have made the difficult decision to temporarily stop accepting new applications into our China program until we see forward movement. As soon as adoptions resume, so will we with application acceptance. The Chinese government continues to assure us that adoptions will resume, and when they do, we will immediately continue our advocacy and recruitment and sending of families. But with knowing the monumental commitment of compiling a Dossier, we feel it would not be in our families’ best interest to continue to submit Dossiers and add to the backlog. We understand that this feels like a step backwards, when we have all been fervently praying for steps forward. And we realize this news will result in many emotions for all of our families, and not just the families directly affected by it. It is difficult, at best, to advise our families on how to proceed when we, ourselves, have such limited information to go by. Please know we are available to each and every one of you to talk through your individual case, and explore your options regarding what might be best for your family moving forward. We will, of course, immediately email any urgent news learned, but we also plan to discuss this latest development, and the impacts on the program, during the June 16 Zoom meeting. For those unmatched families who are directly impacted by this change, your caseworker will be reaching out to you individually.
We are living through a pandemic right now. However, in time, we believe things will return to normal. Thank you for your faith and trust in us as we walk with you through this unknown path. We are praying for all of you and the children who wait.
The staff at Madison Adoption Associates
Access Your Account Online
Great News! We have updated our online donation system, and you now can access your account online. For your security, you will need to request access through a link on our website here. You will be asked to provide your email address, and a link will be sent to you. For your security, that link is only good for 24 hours. But you can access your account as often as you want.
Your new self-service page will let you update your physical address, your email address, change your online donations, view your donation history, and even print receipts for past donations!
If you have any questions, please email [email protected].