The Need For Hope
How New Song’s Emergency Medical Fund is helping to fill in the gap.
As we have continued to develop our relationships and establish a presence in Ukraine, New Song International also continues to hear story, after story, after story of children in the orphanage system who are in dire need of advocacy and medical intervention.
New Song’s long-term goal is to build a specialized care center for children with medical and special needs and to act as a resource for parents who make the uncommon decision to keep their child with medical or special needs from ever entering into the orphanage system. That being said, we are actively involved in caring for the medical needs of countless children who are either living in an orphanage or with their parents, but the resources are not there for them to receive the medical care they so desperately need. These children need HOPE and a chance at LIFE—for someone, anyone, to notice them and to advocate on their behalf. Far too many kids are dying in orphanages because their medical needs are overlooked, not viewed as urgent, or ignored completely. Too many children are turned away from hospitals and potentially life-saving surgery because their case is “too risky”. New Song firmly believes that every child and life is worth fighting for and that their life is precious.
A typical hallway in orphanages and hospitals in Ukraine.
Imagine you are a soon-to-be parent, experiencing all the hopes, dreams, and joy which that reality brings; but upon the birth of your child, you were told that your tiny, helpless baby was born with a life-threatening congenital heart defect. News like that is devastating no matter where you live, of course—but for most parents in Ukraine, it is a diagnosis that feels beyond even the slightest glimmer of hope. For the vast majority of parents in Ukraine, the resources to care for their child—whether that’s financially or practically—are already stretched so thin that adding the overwhelming needs of a medically complex child is next to impossible. These parents are faced with impossible, often unthinkable, decisions. Either the parents have to make enormous sacrifices or choose to place their child in an orphanage in hopes that they will receive the medical care they so desperately need.
Many families are actually persuaded and encouraged by the government, medical professionals, family, friends, and society that placing their child in an orphanage is the best decision they can make. Parents are told that at least their child will be fed, warm, and receive medical care. Society tells them that as long as their physical needs are being met, that is all that matters. Sadly, we know of too many children living in orphanages whose medical needs are not being met in the slightest. We also know the devastating effects that children living in orphanages experience as a result of growing up outside of the loving protection and nurturing that only parents can provide. Even the “best” orphanages cause profound trauma to the children growing up there, and will never be able to replace the role of a parent in a child’s life. Children belong in families.
For the brave families who choose to keep their child at home, some sacrifices they would be forced to make may include the father living and working abroad to bring in better income, covering the cost of expensive medications and surgeries, becoming isolated from society due to social stigma around people with special needs, logistically not being able to leave your apartment with your child due to a wheelchair not fitting in the tiny Ukrainian elevators, not being able to get around town because most public buses and buildings are not wheelchair accessible, and countless other hurdles. Not to mention that many of these families will have to travel abroad for treatment, surgeries, appointments, and therapies because not many doctors in Ukraine have the interest or training to take on these complex cases.
As you can imagine, the war has made families receiving devastating diagnoses feel even more beyond hope.
It may be easy to point a finger at the parents in these situations and blame them for ever placing—or even considering placing—their child in an orphanage. It’s easy to say that you’d never consider anything but making the needed sacrifices in order for your child to live under your roof, but just know that these parents are not the enemy. These parents are stuck between a rock and a hard place and making decisions that a parent should never have to make. We live in a fallen world full of profound brokenness and systems that don’t have the vulnerable’s best interests in mind, but we know the One who is making all things new. Our Mighty God is a father to the fatherless, a light in the darkness, and an advocate for the vulnerable. We can have hope because God is sovereign and just. He makes a way when there is no way.
This is why New Song International developed an Emergency Medical Fund, so that we are able to wrap around families facing challenging diagnoses and children are kept from ever entering into the orphanage system. This is family preservation, this is orphan prevention.
I would love to share some of the stories of children we’ve had the honor and joy of serving through our Emergency Medical Fund. Their names are Ryder and Abel.
Leah and I met sweet Ryder several years ago on one of our extended vision trips to Ukraine. At the time, Ryder was about two years old and anything but thriving. He was confined to a crib, in pain, and mostly overlooked by the orphanage staff. In fact, he was in the “invalid room” at the orphanage—a room that is full of children with complex or critical medical needs. It’s a room that rarely receives visitors and where many children take their final breaths. Ryder was born with a congenital neurological defect that is typically surgically treated shortly after birth. Most children do quite well after surgery—although follow-up care, medication, and physical and occupational therapy are often needed. This surgery and treatment is done all the time in many countries and, while it is brain surgery, it’s a more straightforward type of surgery and is generally not associated with many complications. Sadly, Ryder’s parents were told that their son was “beyond hope,” that his chances of survival were grim, and that the surgery was “far too risky” to even attempt. Ryder’s parents felt scared, overwhelmed, and unable to care for their son, and so he was placed in an orphanage. Years passed and Ryder was still living in the same room of the orphanage and nothing had been done to treat his life-threatening medical condition. Ryder was becoming weaker, less engaged in the world around him, and was in increasingly more pain. Ryder was slowly dying and everybody who had authority to do something about it were instead just pointing fingers and blaming other people. Long story short, it took New Song, other organizations, and caring individuals to continually raise a stink. It took calling the local social services department and asking if they’re okay with the fact that Ryder—like many other children—was dying under their care. It took years of advocating for Ryder with government officials, orphanage directors, and many conversations with Ryder’s parents before Ryder was able to receive the much-needed imaging and eventual surgery that has saved his life. It took moving mountains and knocking down doors. It should not be this hard for a child to receive the medical care they so desperately need; but again, we live in a broken world and there is no perfect orphanage system. Children fall through the cracks all the time. Even to this day, Ryder isn’t receiving all the medical care he should be and many people still have to advocate on his behalf. That being said, Ryder is a miracle and his story is still being written. We praise God for his life!
Devastatingly, we have also had the honor and privilege of caring for children who ultimately did not receive the life-saving medical care that they needed soon enough. Sadly, due to the severe and complex medical conditions of many of the children we serve, this is more often the case than not. We still fight for hope and don’t ever stop advocating on behalf of these children. Their lives are precious and we celebrate that they are fearfully and wonderfully made.
Precious Abel’s story starts off very much like Ryder’s, except Abel was born with a life-threatening congenital heart defect that would require multiple risky surgeries and a lifetime of medications and close follow-up. Abel’s parents also had to make the same impossible decision and were also given no hope on Abel’s prognosis. Abel was so sick after birth that he remained in the hospital for most of his life and continued to develop complication after complication. Just like with Ryder, multiple people and organizations were advocating for Abel to receive urgent surgery, and again everyone was just pointing fingers at everyone else and nothing was being done. Finally, there was progress and Abel was actually transferred to a really great children’s hospital in Kyiv to hopefully receive surgery. By the time he arrived for evaluation, he was far too sick for surgery. He was sent back to the regional hospital in western Ukraine to hopefully recover and be able to return to Kyiv once in better health. Abel died shortly after his return to western Ukraine. His body was too exhausted and frail that he just couldn’t fight any longer. He is now healed and whole and we praise God for that, but mourn for the life that we felt was lost far too soon. What would Abel’s life have looked like if more people dared to care? Those who did care felt powerless and forced to watch him slowly die before their eyes in a system that didn’t have his best interest in mind. So many tears have been shed for this sweet boy. He was known and loved so deeply, but we know our Heavenly Father’s knowledge and love for Abel is perfect and wholly felt now.
One of our partners in Ukraine who was regularly visiting Abel in the hospital and was an incredible advocate for his precious life wrote these words shortly after Abel’s passing. “It's our job to give children the love and attention they so desperately need, but sometimes you're going to love a child so much that you'd need him, just as he needs you. Even though we knew he was very ill, his death came as a huge blow. I imagined it so differently. His life hadn't really started yet. There was so little time to learn what it is to receive love, to be comforted, to laugh, to play, to go out and see how beautiful the world can be. I imagined that time would still come after his surgery, and that he could catch up on everything he missed. In moments when he felt good we could catch a glimpse of who he would be without his illness— a cheerful boy who wants to be with you, acting crazy together and listening to you carefully with his beautiful big eyes. How I hoped that after his surgery we could have enjoyed these moments more and more. We were so happy something finally happened and he went to Kyiv, but even though so many people fought for him, the help came too late. His suffering seems so unfair and senseless and raises so many questions. It makes me look more and more forward to a world where there is no more pain.”
Abel’s story is a harsh and tragic reality that so many children with medical conditions are facing in Ukraine and why it is so important to wrap around at-risk families whose children are facing overwhelming medical diagnoses. We want to help empower parents and families to care for their child and never even have to consider an orphanage—where their child would most likely slip through the cracks. This is why family preservation and orphan prevention are critically important. We know God places children in families and it’s our highest calling and priority to help protect families in vulnerable situations from ever being separated.
Families are worth fighting for.
Children are worth fighting for.
Hope is worth fighting for.
If you would like to partner with us in wrapping around families facing challenging medical diagnoses, please consider supporting our Emergency Medical Fund. If you follow this link and then choose the “New Song Medical Fund” option on the “Purpose” list, 100% of your donation will be put toward critical medical expenses for children and their families.
Names have been changed to protect the dignity and privacy of the children we serve. For the same reason, we also don’t share many details about a child’s specific medical condition. We know that these aspects of a child’s story are not ours to share, but ours to protect and advocate for.
