Willow: adopting a child with complex heart defects

December 5, 2014 ASD, complex heart defect, Family Stories, TGA, VSD 4 Comments

We are all transformed. Every day that goes by, I know that more clearly in my heart and mind than the day before.

We have only been home with Willow for five months.

My husband and I married right out of college, and we waited a while before deciding we wanted to have children. He’s the most amazing thing in the world, and I don’t even understand how I get to spend every day with him. We tried the traditional way to start a family, went through treatment and a miscarriage, and then suddenly felt called to shift our focus. We knew a lot of people who had adopted, and we had always thought we might do the same. Once we opened our hearts to adoption, everything started shifting in our lives. It awakened joy in my heart that had been covered up in despair. What we thought was a sad time or a weakness in our lives ended up being the greatest gift. Thank You, God, for knowing what was best.

We love traveling and learning about other cultures, and I had a heart for children in orphanages from some work I had done in college in Honduras. China became the choice that made the most sense for us to pursue an adoption. Everything started clicking into place.

Once we started filling out our special needs checklist that anyone who adopts remembers well (ugh!), we began to argue. We decided to put it off and complete the other paperwork first. When we had no other option but to finish the checklist, this time we prayed and were kinder to one another as we went through saying yes or no regarding the various needs of orphaned children. We checked ‘mild to moderate heart defects’, but I made it clear to my husband that heart problems made me very nervous. At the time, Kyle said he had a feeling we would have a child with a heart defect. (Looking back, I wish we would have also checked ‘severe’ heart defects, because it would’ve saved us from more paperwork and time!)

Fast forward to one of the most memorable days of my life. We were stuck at home on December 6th, 2013, because we were iced in. So, of course, we were already in a fantastic mood with a day off of work! It was totally silent and white outside. Our social worker called, and we missed it on accident. We didn’t expect a referral yet, because it had only been two days since we were officially logged in to China’s system. When we called back, she said she had a referral for us, but she didn’t know what we would think because the child’s heart defect was pretty severe. As soon as she said on the phone, “It’s a little girl; she’s about 17 months,” my heart jumped in my chest, and I was done. We opened up our email to reveal paperwork and a tiny little smiling face with short hair sticking up all around her. She had such light in her eyes.

But we were scared. Our agency encouraged us to take as much time as we wanted to make sure we were positive. They were not in a time crunch, because Willow was in the orphanage that they had a one-to-one partnership with. We sat on the news for a while, every day growing more certain she was our baby girl. We prayed a lot. Our hearts were soaring. I remember feeling more happiness in that week than ever before! When we got medical information, it reinforced to us that she was a severe case. We hung up, looked at each other, and my husband began to cry. I started grinning, because I just couldn’t help myself. It didn’t matter to us that the doctors were warning us that she may eventually require a heart transplant. It didn’t matter that the paperwork from China just wasn’t sufficient to paint a clear picture of what our future would look like. As I watched my husband cry, I knew I was seeing a father grieving about his child’s prognosis. I knew that my heart was beating faster with a desire to be this little girl’s mommy. Together, we decided that she had struggled to survive by herself for far too long, and she wasn’t going to have to do that alone anymore. In that moment, we made the best decision of our lives.

Willow has Transposition of Great Arteries, L-TGA, with a large VSD (Ventricular Septal Defect) and a smaller ASD (Atrial Septal Defect). Her oxygen saturation is currently right around 80, which is fantastic for a kid in her position. In China, her original orphanage in Yangjiang called Bao Tao foundation to see if they would like to take her in to repair her heart. Thankfully, they moved her to Shanghai and performed the Glenn procedure on her heart when she was about 9 months old. The large hole in between her ventricles had kept her alive until that time, but she was pretty blue which was why the orphanage knew she needed life saving surgery. Bao Tao foundation doesn’t keep the children post surgery, and she was too weak to go back to her orphanage, so she was taken to Luoyang, China with several other kids to be cared for at Maria’s Big House of Hope, a facility run by Show Hope.

I have to pause to give God the glory here for a minute. Kyle and I had gone to one of Steven Curtis Chapman’s concerts in our area in September or October of that year. Steven Curtis Chapman is the Christian artist that actually started Show Hope. We got all excited to hear about his aide to Chinese orphans, we bought CDs, and we bought a storybook for our future child. I journaled about it when we got home. One of his CDs was literally repeated over and over in our home during that time. I called it our adoption anthem, because it lifted me up during the long, out of control journey that is adoption. When we accepted our referral for Willow, we assumed she was in her original orphanage, the orphanage our adoption agency had a partnership with. We did not know of all of the shifting around that was done as these incredible people were working to get her healthy!

So many people in her path helped her, but let me just say that discovering that our daughter was being cared for at Show Hope’s care center made my spine tingle like nothing else in life ever had. We could not believe it. Kyle actually recognized from her update pictures in January the unique keyhole doorways from the photos. We had seen pictures of kids being cared for there when we went to the concert! How in the world?! It might have been the most speechless moment of our marriage. How could God fashion our story so incredibly? How is He so good that He made it so clear to us that she belonged in our home? I don’t know what our future will look like, but I do know that God prepared us for our daughter, and He gave us peace and clarity that we were doing the right thing all along the way. We also discovered that our big fund raising garage sale in 2013 was the exact date of our daughter’s 1st birthday. Thank You, Father, for the repeated confirmation!

We don’t know exactly what is going to happen at this point. We have had all of the recommended tests for Willow.

The cardiologists are still between two options for her. One option would be the Fontan, which would leave her with a single ventricle heart for life. The other option currently is the Rastelli atrial switch, which would give her two working ventricles, more normal anatomy for her future. We thought we would know by now which path we would be on. Looking back, though, when we accepted the referral and brought Willow home, we never imagined any other option besides the Fontan procedure. We didn’t know the anatomy of her heart might lend itself to a two ventricle heart, which would be incredible long term. It has been awesome to be told that we have options. However, it’s hard not knowing right now. They are recommending surgery next summer, because her heart would still be small enough for the Rastelli but it would be large enough for the Fontan.

We can’t fathom going into surgery not knowing which procedure the doctors will perform. We have plans to get another opinion soon to make sure we are covering our bases, but as of right now, God is requiring patience out of us. That’s okay; we are at peace with not knowing which procedure we will face.

All we need to know is that we are going to be doing this one together. Our little lady, our miraculous gift from God, will not face another medical procedure or even a test alone for as long as her family surrounds her.

Don’t be scared of babies with heart defects who just need daddies and mommas. There is an incredible strength in how they have survived up until this point. You don’t have to be the provider of the strength; God has given these children all of the strength they need for their journey. It doesn’t put pressure on you as the parents; it simply allows you to sit back in awe of this little fighter of a person.

God looks at our daughter and says, “It is good.” I believe He does not make mistakes. The Creator crafted our child differently, and we celebrate and revel in those differences that make her who she is.

guest post by Amber R.

4 responses to “Willow: adopting a child with complex heart defects”

  1. Jennifer Opgenorth says:

    Your daughter is just precious! Would you be willing to share the name of the agency you worked with? My husband and I are starting the adoption process, but are very nervous and feel very unprepared. Any help would be great.

  2. Megan Vos says:

    thank you for this. We are working on getting to our son in China. We’ve been home six months with our daughter and Father has led us to this boy. He has a complex heart, has had the Glenn and will have the Fontana when he gets home. I was terrified to accept a child with a complex heart, but know that God will give us all we need to be all he needs. Your daughter is amazing!

  3. Megan says:

    God looks at our daughter and says, “It is good.”

    Yes, yes, yes. Tears rolling down my face.

  4. Terri says:

    Thanks for sharing your story. Just got back from our sons heart cath and we were told he needs the Rastelli or the Fontan as well. We are also planning to have the surgery in the summer but will get at least one to two more opinions. I can’t imagine life without our little guy! So glad we took our leap of faith!

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