What We Know…

February 28, 2015 complex heart defect, double outlet right ventricle, February 2015 Feature, February 2015 Feature - Heart, pulmonary atresia, pulmonary stenosis, single atrium heart disease, single ventricle heart disease, Tetralogy of Fallot, TGV 0 Comments

We know that adoption is beautiful, don’t we? We know that it is a wonderful way to build a family. We also know that it can be painful, and scary, and even though it can most definitely be a dream come true, it can also hold many frightening unknowns…

We have three dreams come true, Three precious ones, ages 6, 4, and 2, who came to our family through the beauty and pain of adoption, and whom we cannot imagine our lives without. They are beautiful and even though they each came to us with their own set of unique medical needs, they have all three been perfect for our family.


Our oldest came to us at almost two and a half with a complex heart defect called Tetrology of Fallot (ToF), and double outlet right ventricle, with pulmonary atresia. What that means is that she had several holes in her heart, and because she didn’t get the surgery early in life her heart had grown to compensate. She was also missing her entire right ear (called microtia) and had profound hearing loss in both ears, for which she now wears a hearing aid in her left ear. She had surgery to repair her ToF four weeks after we got home, and she will have a second surgery in the next few years to replace her pulmonary valve. She has done amazingly well, and has come SO incredibly far in the four years she has been home.


Our son came to us at almost three years old, with unrepaired unilateral club foot, and was otherwise healthy.

And our baby came to us just four months ago… we were planning to “go easy” this time around, and “just take our time.” I know many of you can relate, ha!

But then we asked God to lead, to show us if we were meant to move out of our comfort zone. And it seemed we were… Every little one we came across, and every file we were drawn to had very complex CHD’s. When our agency sent us the file for this precious eighteen month old little girl, we were not surprised that she had complex CHD. We talked about it and made our decision in two hours… we had been doing our homework, talking to our oldest daughter’s cardiologist about different complex heart defects, and we knew what every scary diagnosis in her file meant…

So we went for it! We saw her file in April, and we travelled for her in September. She has single ventricle, single atrium, with a common valve. She has transposition of the great vessels, and pulmonary stenosis. She also has heterotaxy syndrome with asplenia, and a possible ciliary disfunction. She had a Glenn placed in China at five months old. We were hoping that she would have a Fontan, but upon coming home it was found that she was not a candidate because of high Glenn pressures.

She has been in the hospital four times since we brought her home, and she had her first surgery with us in January to repair a leaky valve and disconnect a pulmonary artery.

We don’t know what the future holds for our precious one…


But there are many things we do know.

We know we are in good company. The adoption community excels at supporting and coming alongside one another. We have been prayed for, and encouraged, and even brought to tears by the thoughtful emails and outpouring of love from this community.

We know that we are blessed… so blessed, and so honored to be chosen to be parents to these little ones, and to be their family.

We know that we will be pushed and pulled in new directions, and we know we will need to be strong, maybe stronger than we have ever needed to be, but we just might find that we are stronger than we even thought we were.


We know that we will need to be brave, and we know that we can do hard things.

We know these days will be hard, but they could just be the best days of our life, because they will be days filled with hope.

We know that this is what faith is about, this stepping out into an unknown that is out of our control.

We know that sometimes loving someone who will not outlive you can seem impossible, but we also know the God that makes all things possible, even this.

We know that adopting a child with complex, serious needs can and will stretch your family and your marriage and your peaceful calm, life…

But we also know that this, and these babies, will be totally worth it. And we would do this again in a heartbeat.

guest post by Joanna who blogs at The Crafty Nester

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