One Dad's mission to raise awareness of this deadly pediatric condition.

It will break your heart.

UPDATE: The father of baby Lotte has written on Facebook to say that she suffered a brain haemorrhage. It did not look like Lotte was going to make it with other complication present. Adam (her father) said, “Out of love for her, Megan and I made the terrible decision to discontinue the artificial support of her life on ECMO. It was the hardest thing we have ever had to do, but we feel comforted knowing that she never suffered, and that we bore all of her pain.”

He said they’ll never forget the three beautiful days he and his wife had with their daughter and they will tell her siblings about her one day. He said, “She will walk with us forever.”

A father has taken to social media to find a man who photographed him and his wife, Megan on New Years Eve in 2013. The father, Adam reached out to a man named Brandon after his first (and newborn) daughter, Lotte suffered from a serious congenital heart defect (CHD).

Adam wrote a heart wrenching post on Facebook page Human’s of New York explaining his situation and hoping that Brandon could help spread awareness about paediatric CHD.

In his post he said:

On Monday, Megan gave birth to our daughter Lotte (our first child), who had been diagnosed with a serious congenital heart defect (HLHS). On Thursday, she underwent open heart surgery for nine hours. Although the procedure was technically a success, an unexpected complication prevented them from taking off the heart lung bypass in the OR. The surgeon made an unprecedented decision to keep her on ECMO (life support) for a few days to allow her heart to rest, so that they could try again to restart it.

The father explained what he and his wife had been going through over the past few days. Something no one could ever imagine having to experience.

She has basically been in a stable condition, but over night developed some complications that necessitate trying to start weaning her off the machine today. I have no words to describe the torture we feel as parents, when all we can do is sit by our daughter’s beside, trying not to look at the tubes and wires coming out of her open chest, and holding her cold little hand.

Adam explained that he got two beautiful days with his daughter, before the surgery. She was ‘normal’ at the beginning and he got to do all of the dad duties he’d been waiting so long to do, like feed her and change her. He explains that he did get to see her open her eyes, and for that he is thankful – he admits that he may never see those eyes again but is so grateful he saw them just once.

His story is something no parent would want to go through, but many people do. Adam wants to raise awareness about CHD, and is hoping Brandon will help him do that. We want to do our little part too.

"Heart defects are present in around 1 in 100 babies, making these the most common birth abnormality. Sadly, heart disease in children is the leading cause of young children death in Australia, accounting for more than 30% of childhood deaths - more than all other childhood diseases combined," the Heart Foundation website says.

In their heart information, the Heart Foundation says that a CHD is something a baby is born with due to abnormalities in the heart's development. They're caused by a problem in the heart's development during the first few weeks of pregnancy, but often the exact cause is not known.

The organisation goes on to say that while one in 100 babies are born with a heart defect, many are minor and treatable.

It seems that dear little Lotte may have a more severe case. We can only hope that she will pull through so her father can see her open her eyes again, and again and again.

We hope she survives so her parents can see their little girl grow up and fulfil all that they have dreamed for her.

But in case dear Lotte doesn't make it through, we want you to know about CHD, because a father reached out on Mother's Day saying this was especially hard on his wife and asked that his message get shared.

 Adam's final plea is this:

I wanted to ask whether you could somehow help us increase awareness of pediatric congenital heart disease, which is sadly not widely known and publicised. It's especially hard for Megan that today is Mother's Day, and perhaps you could share a photo of Lotte on your site. Doing so would not only inform your readers of this important and terrible condition, but help us hear the support of others.

The feature image is via Human's of New York Facebook.

Please share this to help raise awareness and share your own stories in the comments.

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