Saying Yes to a Child with a Terminal Diagnosis

November 28, 2016 complex heart defect, Heart System, terminal diagnosis, TGA 10 Comments

When we felt God’s pull on our hearts to adopt, it was the year 2012 and we had three biological children, ages 11, 8 and 6. We had never thought we would adopt, but God had created a yearning so strong in our hearts that we couldn’t say no.

Adoption in and of itself was very far out of our comfort zone.

We love and enjoy our children, but I wouldn’t say we were people who ever envisioned a large family. We enjoy order and predictability and of course, adding children pretty much guarantees chaos. But God wouldn’t leave us alone until we said “yes”.

In 2013, we began the process to adopt a little girl from China. Since we already had two boys and one girl, it made logical sense to us to adopt a girl.

At the beginning of 2014, although we had not traveled yet for our little girl, we began to feel the stirring to adopt again. This made absolutely no sense since we had not even completed one adoption yet. But again, we couldn’t deny what we knew God was telling us. We had seen God provide for this one adoption in ways beyond our imagination and so when thinking about the cost of adding another child, we knew God would provide again.

When it came to the thought of adopting two children at once, both with medical needs, I think God provided some temporary blindness to rhyme or reason. I appreciate when God does this in my life, because I can easily use logic to explain why I shouldn’t do something God is leading me to.

One afternoon in March 2014, I checked our agency’s website and saw the most beautiful little boy. He stole my heart in that moment, before I saw his special need or knew anything about him. I asked for his file and when I received it, I can remember thinking, “How has no one snatched this boy up? He is perfect.”


When my husband returned home from work that day, I showed him the file and he immediately knew as well that this was our son.

This little boy’s file was full of things we didn’t understand and so we sent it off to the specialists to review. The reports that came back were grim and included words like “congenital heart disease” and “terminal”.

He was born with Transposition of the Great Arteries which means the major arteries of his heart were switched. When born with this in the US, an infant would have surgery to correct the condition very soon after birth and would go on to live a long and healthy life. But this little boy had lived with the major arteries of his heart being switched for two years and therefore was at low oxygen saturation levels which in and of itself, leads to a myriad of other issues. Most likely he would not be a candidate for the arterial switch surgery after living this way for so long.

The doctors gave us a poor prognosis, told us he would live for a year or two at the most, and advised against bringing this little boy home.

We sought advice from our closest friends who also said that we shouldn’t adopt him. They said we weren’t thinking of our current children and what it would do to them. That was like a sucker punch to the gut. We would never do anything to harm our children!

How do you “count the cost” of what this will do to your current family and yet follow what God is telling you to do?

We wrestled with the decision for a week. It made no sense to bring this little boy into our family. We would be putting our other children through a world of hurt. How could we adopt a child we knew would die? But we couldn’t get past the feeling in the depths of our hearts that this was our son.

We knew that he would die with or without a family and decided he needed a family to surround him. So we said yes and in that moment felt peace that only comes from God.

In October 2014 we traveled to bring home our daughter, Annabelle, who was three and a half at the time and our son, David, who was two and a half. We had many concerns if David would be able to survive the plane trip home, but God was good and we landed safely on American soil.

David had been blessed to be cared for by New Hope Foster Home and was loved on by many in his two and a half years. Because he had been loved, he knew how to love and our connection was instant. Annabelle had a much different background and her attachment to us took much longer. We were able to see right away the difference love makes in the first years of life.


When we got home, David immediately captured the hearts of our other children. We were all smitten with this little charmer. We took him to our local children’s hospital six days after arriving home. They were expecting him and immediately began lots of tests to figure out exactly what was going on with his heart. I remember at our first visit, after he slept through a two hour echocardiogram, the doctor came to us and said that they needed to do a heart catheterization to get more answers because they had no idea how he was alive.

For those first few weeks we were back and forth to the hospital many, many times. It was an almost two hour drive each way and an endless amount of appointments. I felt such guilt that I had abandoned Annabelle, but yet knew this was so critical for David.

We developed a routine of sorts where my husband stayed home with Annabelle and the other children while I took David to his appointments. We were trying as best as we could to keep continuity of care for Annabelle as she was so traumatized by the changes that had taken place in her life. I did enjoy these special alone times with David. He was a snuggly boy who always had a smile and quickly became a favorite of the doctors and nurses.

He was an old soul in a child’s body.


The connection I had with him ran deep.

After his heart catheterization and other tests, the doctors came to us with the exciting news that we never expected to hear.

They felt they could fix his heart and he would lead a long and healthy life! They had tested the pressures in his arteries and the tests came back that he was eligible for the arterial switch. His heart could take it! He would be healed!

From that moment on, we never thought again about the possibility of him dying. God was going to heal him. He had a special plan for this little guy and had rewarded us for our step of faith.

They wanted to do his surgery as quickly as possible so we scheduled it for December 17, 2014, in the hopes that he would be home for Christmas. Again hindsight is 20/20, but I wish we had waited.

I wish we had thought about the possibility of him dying and better prepared our other children. I wish, I wish, I wish…

The morning of the surgery I asked the surgeon what the chance of anything going wrong was and he said, “Less than 10 percent.”

As the nurse came to give updates every hour, I noticed her demeanor started to change. At first they were pleased with how the surgery was going, but when they went to remove David from the bypass machine to hook his heart up again, his heart spasmed. This damaged the heart muscle and therefore the heart was not pumping as it should. He came out of surgery on the ECMO machine which performed the actions of his heart in the hopes that given a chance to rest for a day or two, his heart would regain full function.

The ECMO machine comes with its own risks and dangers and although it was keeping David alive, it was also dangerous for him to be on it for too long. The next three weeks were full of ups and downs, mostly downs, as David declined. They kept testing his heart function and saw only very minimal improvement.


The ups for us were the times when he would wake up and we could look into those beautiful eyes once again and tell him we loved him. The downs were watching his body shut down and deteriorate before our eyes.

We had to make decisions no parents ever want to make. We spent Christmas Day very differently than we had envisioned before, and as our family sat at his bedside, he continued to decompensate. Every day we prayed and hoped for a miracle.

People all over the world were praying for David. I would sit beside him day and night and pray for him, sing to him, and whisper into his ear how much we loved him. But on January 7, 2015, David received the ultimate healing, very different than the one we had pictured three weeks prior, and we passed him from our arms into the arms of Jesus.

To say you are bringing home a child to die is one thing. To live through it is quite another.

When David died, my own heart shattered. It didn’t matter that I had not given birth to him. It didn’t matter that he had only been in our family a short time. He was our son and God had graciously given us no “attachment” period but had grafted us together so quickly that we were able to enjoy every precious moment.

I was numb and then in the weeks and months that followed, I was angry.
I watched my other children hurting so badly.
My husband was in pain like I’d never seen him before.
The friends who had told us not to adopt him? They walked away.
I was not even sure who God was anymore.
Why would God have led us down this path?
Why does God heal some children and not others?
My faith was shaken to its core.

I wish I could say that within a few months, things were better. But it took a long, long time for things to even begin getting better. It took a long time for me to be able to see that God grieved also when David died.

God created a perfect world and through sin, death entered our world. My faith was slowly rebuilt. I saw my husband and my children begin to heal. We learned to be thankful for those who relentlessly loved on us and to tune out those who told us we should be healing quicker. Believe it or not, there are people who will tell you you’ve grieved long enough.

We learned so much about life and death and people and relationships and most of all, God.

God blessed us during this time with an amazing therapist who walked us through these treacherous waters, decreasing his fees so that we could see him as often as needed. That therapy proved invaluable. God blessed us with numerous family and friends who were relentless in their love for us, even when we were unlovely.

Healing is a gradual process and I don’t think I’ll ever be able to declare myself “healed”. There will always be sadness in my heart when I think about how much I miss David. Grief comes in waves and sometimes something small can trigger sadness. But I can also think of David with happiness as well. He touched more lives in his two and a half years than most people will in a lifetime. He was a little boy who loved life in every way and had the most contagious smile.

In July 2016, we traveled to China again to adopt a little boy.

If you would have asked me before if we would ever adopt again, my answer would’ve been an emphatic “no”. My heart was broken and any desire to adopt again was buried with David. But God started to work on us, first through our children, then my husband and eventually God changed my own heart.


I’m almost sure that without David’s death, we would not have adopted Matthew. Someday I will tell him about his big brother and the impact he had on our family. Sometimes people tell us, “David was so blessed to have had a family,” and although I appreciate the kind words, I have a hard time seeing it that way…

We were the ones who were blessed.

God blessed our family tremendously by allowing us to have a short time of being touched by this special boy. He allowed us to be a part of David’s story. David could’ve died in China without us ever knowing him. We are so thankful God allowed us this privilege.

We want people to know that adoption is not only about giving an orphan a home or following God’s call. It is so much more than that. Answering God’s call to adopt is allowing God to bless you in more ways that you could have ever imagined. I shudder to think of how many of God’s blessings we miss out on because of not doing what He has asked us to do.

It’s easy to get caught up in searching for the most minor special need, the most fixable special need, and the least noticeable special need. It’s our human nature to choose the path of least resistance.

Why should we choose hard and choose pain?

Our family would like you to know that sometimes the biggest blessings come out of these situations.

Our faith is deeper. God has deepened our relationships with him and with each other. David’s death put things into perspective for us. We long for heaven like never before. We tend to not get as worked up over trivial things.

And the pain we feared would consume our older children? It refined them. It brought about such deep faith and maturity in their lives.


If God is leading you toward a child, please put your fear behind you and consider the blessings God has for you. We should not define a child by the severity of their physical or emotional needs, but instead see them through the eyes of the Father.

They are all truly precious in His sight.

Sometimes the paths God calls us to are not the easy ones, but they are the best ones.

– guest post by Daphne

10 responses to “Saying Yes to a Child with a Terminal Diagnosis”

  1. Sherry says:

    Wow, wow, wow! Thank you for this. We love our son with fierce abandon, and stepped out in faith when we said yes to adopting him, but we knew his special needs weren’t life threatening. They’re challenging, but we don’t look back. Thank you for sharing your story!

  2. Julie says:

    Such a touching story. Thank you for sharing your story of faith with us all. So encouraging. What a little sweetheart your David is! So glad his life touched so many.

  3. Our story is so much like yours! Would you email me?

  4. Mary says:

    Thank you for sharing your heart strengthening story.
    What a blessing to have the privilege to Be known as the parents of David. His life has touched the hearts of many and your families story will help families step out in faith and parent medically fragile orphans.
    Praying for your sweet family

  5. Holly says:

    Wow…reading this with tears. You story is so powerful. God Bless your family and the gift David was and continues to be.

  6. Amy says:

    Daphne, I don’t really have words. But it has been an honor to “know” you through our XuMama group. Praying with you all during David’s surgery and last moments impacted my life. I am so happy Matthew has joined your precious family. Grief has an odd way of adding joy when we least expect it.

  7. Jenna says:

    Dear Daphne, it was hard for me to read this because I walked through David’s time with you from afar and it was difficult to learn God’s perfect will for David and for your family. Yet beauty and love rise from the ashes where fire has ravaged. The soil of the heart becomes even more fertile for new gardens to grow. I respect and admire your family and your faith so greatly. I am happy that you are continuing to follow the Lord and His plans for you. I am so blessed to call you my cousin. Love you.

  8. Sophia Neri says:

    oh my God, I’m speechless, this is such a gut wrenching yet beautiful story. What a precious family you are!

  9. Aubrey Fulmer says:

    Hello Daphne!
    This is one of the most beautiful, real and moving things I’ve ever read. I worked as a nurse last year with New Hope! I do believe I knew your son Matthew when he was there! 🙂 So incredibly grateful he is with a family such as yours. Thank you for sharing your heart.

  10. Aubrey Fulmer says:

    Praying for all families involved.

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