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MTN News-BILLINGS – It’s a birth defect rarely talked about.

But scores of infants die of  it every year.

Now one young Billings mother who lost her infant son to Congenital Diaphramatic Hernia or CDH wants to bring awareness to help other parents find support.

“We saw him open his eyes once or twice, so it was really hard not being able to  hold your baby like everybody else does, and I don’t think a lot of people get that,” said Ali Sanford. “You just stand there over your baby’s bed while he’s hooked to multiple machines keeping him alive, and it was extremely, extremely hard.”

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It’s every parent dream to see their child grow up and live a healthy and happy life.

But that dream would soon fade for Ali Sanford.

Early in her pregnancy with baby Easton, the unthinkable happened.

A diagnosis in November 2014 would soon change the Sanford’s life forever.

“When he was 20 weeks gestation, throughout the whole pregnancy, I kind of had a feeling that something wasn’t right, but summed that up to first time pregnancy. Then we officially got the diagnosis that he had Congenital Diaphragmatic Hernia.

Congenital Diaphragmatic Hernia (CDH) is defined as a congenital malformation or birth defect of the diaphragm, a condition that prevents the lungs from developing normally and can be life-threatening.

After several medical opinions and tests, it was confirmed that Easton had CDH.

“Everyday we didn’t know if he was going to survive. It was so hard because when he was born, they didn’t think he was going to make it out of the delivery room. Day by day, minute by minute, we’re there with him, you could just touch him, you couldn’t hold him. He never cried, he was completely sedated his entire life. ”

“When my water broke, it was a happy time,” said Easton’s Grandmother Gail Wichman. “I knew the end result would be a beautiful baby. She knew that when Easton was born, they probably wouldn’t be taking him home. They always had hope to the very end, but she just knew it wouldn’t happen. She wanted Easton to stay inside her tummy where he was safe.”

“His lungs didn’t form when he was born. He was on life support for those 11 days in San Francisco, one of the hospitals that specializes in it. It was just a little too much for his body, so we had to take him off life support on the 11th day and let him go.”

A difficult decision for any parent, Mom Ali said she was overcome with emotions, but looking back, she is grateful for the opportunity to spend some time with Easton.

“It’s been a blessing those 11 days. I was angry, but seeing that we got 11 days was a blessing. ”

Easton was born on November 12, 2014. He passed away on Nov 23 that same year.

“This is our second Christmas without him.”

This week Ali took Easton’s picture with Santa at Rimrock Mall.

“It was important because I got to do something that normal parents got to do. I got to take my son and got his picture taken with Santa. The staff there was really nice. They wouldn’t let me pay for anything. They gave me the picture and the whole package for free. Everybody gave me hugs.”

These days, the cloud of grief is slowly lifting from Ali and her husband’s life as they look forward to the arrival of a healthy baby girl in April 2016.

Meanwhile, Ali has found a purpose in Easton’s short life, she has dedicated her life to shedding light on the birth defect that took her son’s life.

“When we first got our diagnosis, they said it’s a very lonely diagnosis, you probably won’t find anybody. I found a lot of parents and connected with them, and I think that’s the best way to get through this because I can talk to other moms that know exactly what I feel. We share lots of stories of everyday battles with each other, and I really, really think that’s important to find a group that you can lean on.”

Before returning to Billings several months ago, Ali lived in California, and last April, she and a group of support moms rallied in Washington, D.C. to bring awareness to CDH.

The effort paid off. April 2016 will be recognized as CDH Awareness Month in Bakersfield, Calif.

Ali hopes Montana will also join force with California to bring awareness to CDH.

“This affects 1 in 2500 babies, and that’s actually a lot of babies and a lot of pregnancies.  Many people don’t know about this, and these babies are given less than 50% chance of survival. Only 50% live, so attention needs to be brought up about this because they are dying and there is no research for what causes it,” said Ali.

Ali and Amber Bullard, another mom who lost her daughter to CDH this year started a non-profit foundation to help families dealing with the birth defect and to bring awareness to the condition.

To connect with Ali and other families, check out their “Breathe Easy” Facebook page.

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