Strength for the Journey: Adopting a Child with Complex Heart Defects

February 26, 2017 atrioventricular canal defect, complex heart defect, Family Stories, February 2017 Feature - Heart, Heart System, heterotaxy, hospital stays, pulmonary atresia, single ventricle heart disease, VSD 0 Comments

I was just able to sit down with a cup of hot tea on a cold and lazy Saturday afternoon, relishing in the quiet and calm. Also know as, daddy is home so he is dodging toddlers and taking care of farm animals while I hide in his office to write this article. With six kids, four under the age of six, it’s pretty busy around here most of the time.

To prepare to write, I was looking back over blog entries and Facebook posts over the last couple of years. Amazing how much we forget. We are always quick to judge the Israelites and how quickly they strayed, how quickly they forgot what they had seen. I say I would have never forgotten about God’s miracles as quickly as they did… but well… I’m pretty sure I would have.

I know that the Lord’s hand has been heavy on our family since we brought Journey Mei home 6 months ago, but the details… oh the details… I had forgotten so quickly. I am so thankful for this opportunity to share what the Lord has done in our lives and so thankful that I took the time to document it before so I could look back now and in the future.

Really the entire story of how Journey Mei found us and how we were led to adopt her is really amazing. Maybe I can share that another time. But since it’s heart month, I think I’ll just stick to the dramatic details and heart wrenching story of trying to fix our daughter’s little broken heart.

Wang Shao Mei was born in China with CHD, a complex heart defect. Her specific situation doesn’t really have a name, it has many names: single ventricle, heterotaxy, dextrocardia, pulmonary atresia, VSD, AV canal defect and interrupted inferior vena cava. (And I actually think there is more but that’s all I had written down LOL) Honestly, there isn’t much about her heart that really works at all.

She was abandoned at just a few days old, and left alone and dying. I can’t imagine what that mother was thinking and feeling as she laid her baby down and walked away, holding on to a shred of hope that her child would be found, loved, and healed. I ache for her.

Thankfully, a wonderful foster home took “Mei” in at just a couple of weeks old, so blue, her heart failing, she was fighting for her life. They sent her to the hospital immediately hoping and praying for a miracle. But a failed surgery led to months of critical sickness, despair and worry.

Then in June of 2015, advocates for the foster home were able to convince surgeons to try the surgery again, from a new direction. It didn’t fix Journey’s heart. Her heart can never be fixed. But each surgery has the chance to bring oxygen, life and buy some time. Which is what that surgery back in 2015 did. And at that point, after that surgery, the surgeons in China instructed her caregivers that they had done all they could. They had no more options for Journey. So she stayed in the foster home, and was loved and cared for, waiting for a family.

In July of 2016 we brought Journey Mei home from China, our beloved daughter. We had no expectations at all regarding her condition.

We knew from the very day we chose to pursue her file that her heart condition was critical, rare, and had a very low chance of any kind of repair. We were told we were “way down on the list”, and that several families were interested in her file. We decided that maybe it just wasn’t meant to be.

On the day we received the call that it had gotten down to us, we were the last hope for her, there was no one else in line, I called and spoke with a dear friend of mine who has a son with a very similar heart condition, searching for answers. Her son hasn’t been able to have much done to help his heart due to pulmonary issues, like Journey. But the day I talked to her, he had given his life to Christ, at 9 years old! This boy who almost died in China and then again here in the USA, was now a forgiven and cherished son of God the Almighty Father!

If we could just love Journey Mei long enough to share the love of Christ with her, to tell her about God’s loving kindness, to share the gospel with her…it would all be worth it. So, we cautiously contacted our son’s cardiologist.

We have a son we adopted in 2014 who also has CHD, not as rare or severe as Journey Mei’s, but we felt at least a little prepared because of that, and had been so blessed to work with the doctors at Children’s hospital in the past. The cardiologist looked over her file and medical records and, honestly, gave us very little hope. He said they would look at her when she got home, and give it their best shot, but from what they could see in her file, there didn’t seem to be many options.

Journey’s file stated that her pulmonary arteries were “negligible”. This was one of the main concerns from the beginning. A heart repair doesn’t do much good if the arteries can’t do their job. So we prayed. We prayed for over a year that the Lord would widen those arteries enough for them to be able to do something for her once she got here. It’s why the Chinese surgeons said they were done. Those arteries. They were too small to do anything.

After seeing our cardiologist for the first time, a heart cath was ordered and scheduled. It seems that heart caths are really the gold standard when finding out what’s really going on inside the heart. It’s the first thing they wanted to see when we brought our son home, and now again with Journey.

The morning of the heart cath we were praying again. Asking and expecting God to work in our daughter’s heart, to save her life, to perform a miracle. When the surgeon returned to go over the cath results, we were stunned. He said that he never expected the arteries to look that good from what he had seen in the files from China, and that there was a surgery, one surgery, that might, just might do her some good! God had changed the anatomy of her arteries! He had answered our prayers!

The details of this surgery were, to be honest, daunting. It is called a Kawashima. The hospital had only done this surgery a handful of times, versus the hundreds of times they had done other surgeries. The hospital stay would be lengthy, nearly a month, and from what they said, complications were extremely common.

I went home to read up as much as I could and honestly didn’t get anywhere. Medical articles about the surgery were hard to understand and other searches in heart groups didn’t get me anywhere. No one else’s children had had this surgery.

Which just left one thing to do, again. Pray.

So pray we did. We reached out to our church, our family and friends and people across the world to pray for Journey. We asked them specifically to pray for the surgeons and to pray against the long hospital stay and complications. I wish I could say that I was filled with peace from the very beginning. But there were times when I literally asked my husband if we should even go through with it at all. I mean, Journey was doing ok, she was blue and she couldn’t walk very far, but she was alive! Dare we chance this risky procedure?

Honestly I was scared to death and it came down to the fact that my husband felt like it was the right thing to do, so I just trusted his leadership.

Surgery day came and went and Journey exceeded every expectation of ours, of the doctors and nurses, and everyone she came in contact with! She was out of ICU in less than 24 hours. 24 hours! The nurses said over and over that they truly couldn’t believe what they were seeing! They said they had never seen a child recover from open heart surgery that fast, and had never even heard of a Kawashima!

We just told people over and over and over that it was ALL to the glory of God and to His honor. He was the One who orchestrated it all and brought about this miracle. The love and support that we received from so many people was overwhelming and so humbling. Surprises awaited us every day both at home, and at the hospital. Juggling five kids at home and one in the hospital is not easy by any means, but oh the blessings we received from our good, good, Father.

We would have never experienced any of that had we not trusted the LORD and followed His leading.

A month later we did make a trip to the ER after she developed a blood clot and fluid on her left lung. The doctors said they expected it and weren’t surprised. After a week in the hospital we came home having to do blood thinner shots twice a day and back on lasix. At first, we wanted to despair, but God was faithful. Journey Mei was a trooper like you’ve never seen. She cried for the first couple of shots and never looked back. Something I dreaded so badly…. I had talked to friends who had done the shots and cried through every single one. And only a couple of weeks later, the clot was gone. No more shots!

Our story with Journey isn’t done. It’s guaranteed that Journey’s heart will need more help from surgeons in order to “buy some more time”. But it’s taught me that the very things we fear the most are the things that help us to feel the Lord’s presence more than ever. And, most of the time, the expectations of what we fear are much worse than the actual thing itself.

It’s scary to consider adopting a child that you may not see grow up.
It’s scary to look around and see the stories of those who have loved and lost.
It’s frightening to think of going through that much only to let go.

But in these things, the Lord is molding us and teaching us and showing us more of Himself than we could ever have seen had we not taken the chance. And it’s not about us anyway. It’s about Him.

It’s HIS story.

– guest post by Gia: blog || instagram

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