We received the news in an unlikely place — Tongren, China. “Emily called and Danny is experiencing some type of liver failure. They are being transported to Seattle Children’s Hospital,” the email from our son, Andrew, read. We were stunned.
In the following days we would learn that a biopsy showed there was no saving baby Danny’s liver. Our 3-and-a-half month old grandson needed a transplant. We made our way home, then on to Spokane to provide support for this little family, who also have an almost 2-year-old daughter, Rachel, as they awaited a donor.
With us from the beginning has been our China Prayer Team – assembled several months before our departure for that trip and then continuing in place after our arrival back in the U.S., forming a strong prayer team for Danny. It was humbling to learn how many people were praying for him and for his family during this time, including many in China. Danny’s name was lifted before God many times from several areas of the world.
A few days into our Spokane stay, Danny’s health began to decline, and the liver team at Seattle Children’s decided it best to have Danny relocate to Seattle while awaiting the surgery. A day that began as one where he might be coming home (in Spokane), ended up with him and his mother being life flighted to Seattle.
Waiting for a donor is not a place anyone imagines themselves being; the whole process feels very outside of personal control. Liver transplant candidates are given a PELD score based on measurable criteria. These scores range from 6 to 40; Danny’s score was 35 which placed him very high in priority for the surgery. The score is also balanced between great need and being strong enough for surgery.
Finally, late Saturday night, the call came. A liver was available, and surgery was scheduled for Monday. We were ecstatic, but also saddened by the knowledge that for our baby to live another family had to lose their precious little one. We don’t yet know the specifics other than that this family made it possible not only for Danny to have a chance at life, but his/her little heart also went to a baby at the hospital who was in desperate need.
It was at that point that I began thinking about the heart and the liver – life was made available through death – gain through loss, hope through grief. Though we may never know their whole story, we will, at some point, have opportunity to write and thank this family for their amazing gift to us.
The transplant surgery was successful — three surgeons, nurses, and support medical staff formed the team that worked on Danny for over eight hours. The visual effect, even immediately after the surgery, was amazing. Danny went from looking extremely jaundiced and sickly to a nearly normal skin tone. Within nine days his liver labs and vital signs were all stable enough for him to be discharged from the hospital.
Our experience at Seattle Children’s was nothing short of amazing. When we talked with nurses about how compassionate and kind everyone was, they would often say, “That’s pediatrics. How can anyone work with sick babies or children and not be tender toward them?” The compassionate care — from the surgeons on — made our time there much less stressful than it could have been.
The family-friendly atmosphere created by volunteers and kid-friendly activities and spaces, opened up a new world to us in becoming aware of the needs being met for families with hospitalized children.
One morning, shortly after surgery, I was able to meet one of the surgeons personally, and tell him that while I appreciate that Seahawks quarterback Russell Wilson regularly visits Children’s patients and their families, for me the real heroes are our surgeons. He seemed to humbly appreciate that!
The heart of our experience didn’t end with leaving the hospital. Danny’s parents, Emily and Jake, had been put on a waiting list for housing at the Ronald McDonald House located just blocks from the hospital, and a room was made available to us just before Danny was discharged.
I am probably not alone in being someone who was distantly familiar with the RMH. I even had a mental image when someone would refer to this place available for families experiencing displacement during long-term health care.
It’s quite another thing to be on the receiving end.
This particular RMH had a lot of kid-friendly spaces, especially the playhouse and swing, a beautiful fish tank, kind volunteers, a pantry loaded with groceries, dinners often prepared and served by civic and church groups, a laundry room lined with twelve shining washer-dryer units and detergent provided, and quiet dens, especially the one with a wall lined with books.
They offered walking paths lined with colorful flowers and shrubs, therapy dogs in the main living room most evenings, beautiful furnishings, colorful artwork, and smiles.
This supportive atmosphere makes all the difference for families under the stress of hospital stays, chemotherapy sessions, and clinic/lab visits. With reduced shopping and cooking chores, family members are free to devote themselves more fully to the needs of the patient and siblings.
Our life of community here began — conversations in the kitchen, helping each other out in small ways, attending a birthday celebration for a 3-year-old who carries her nutrition formula feeding tube in her little personal backpack.
The truth about hearts is – they experience heartbreak. And that is the other part of this journey. As the days pass, and we log more hours fixing food, cleaning up in the same kitchen, sorting laundry, dozing in front of the same TV screen with these former strangers – a predictable thing happens. We begin to hear their stories. We begin to learn their children’s names. Their diagnosis. Their prayer requests. The treatment plan. The amount of time they’ve been here dealing with this challenge, and when they hope to go home. If they will go home. We become friends. Hearts break.
There are many take-aways from this journey. Don’t take the gift of each day for granted. Love your children, your family, and whoever else God puts in your path. A burden shared is lightened. Prayer works.
Organ donors are needed; people are waiting, children are waiting. Volunteers who give time and love to families in health crisis are invaluable; they make the journey possible. Financially supporting the Ronald McDonald Charities and/or your local children’s hospital is money well invested.
Being on the receiving end of such generosity is humbling. It changes a person. I know it has changed me.