We're sharing heart-breaking photos of our baby girl in the hope it will spare others our agony | The Sun

YOUNG PARENTS have shared heart-wrenching pictures of their baby girl, who fought for her life while hooked up to machines and wires.

Aysen Genovese, 22, and her husband, Jacob, 23, were devastated when Ava was rushed to the NICU seconds after being born.

She had a hole in her diaphragm – known as a congenital diaphragmatic hernia (CDH) – which prevented her heart and lungs developing properly.

Tiny Ava fought for her life for 12 days, hooked up to countless wires and machines – and powerful photos shared by Aysen show just how sick baby Ava really was.

Ava died after her blood started clotting, which caused her to have a stroke.

The parents left the hospital alone and both needed counselling to process the "isolating and lonely" trauma of losing a child.

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Aysen, a dental receptionist, from Hesperia, California, US, now raises awareness of the trauma of child loss – so people around the parents know how to support them.

She said: "It's isolating and lonely. My husband and I leaned on each other a lot.

"It makes people feel uncomfortable to think a baby died, but if you're uncomfortable imagine how the parents feel.

"I had high hopes for Ava, I imagined her being older and having more friends than I did in high school.

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"I imagined her being a cheerleader and getting fights with her dad over her getting a boyfriend."

Despite their trauma, the parents say they are now trying to get pregnant again and are going through the processes of regulating Aysen's hormones once more.

But they'll never forget their tiny daughter Ava – and urge people to "ask questions" of parents who have experienced child loss before.

"Asking questions should be normalised," she said.

"Ask me what she was like.

"People never ask, but she deserves to be remembered."

Aysen has polycystic ovary syndrome so was delighted when she got pregnant with Jacob, a US Air Forces recruiter.

Her waters broke early at 36 weeks and Ava was born naturally on August 1, 2022, at Cedars-Sinai Medical Center in Los Angeles, California, US.

"I held her for a couple of seconds after she was born, then I didn't get to hold her again until after she passed," she said.

"I was the only one who got to hold her while she was still living – not even her dad.

The hole in Ava's diaphragm meant her heart and lungs were pressed against each other, so hadn't developed properly.

Her blood and oxygen flow were poor as a result, which led to a hole in her colon which was releasing air into her chest and belly, they said.

What is a diaphragmatic hernia?

Diaphragmatic hernias occur when the diaphragm does not form completely in babies as they develop, leaving a hole.

The diaphragm is a curved muscle that separates the contents of the chest from the tummy and also helps us breathe.

A hole in it means thatpart of the intestine and other abdominal organs can to move into a baby's chest, which can squash the lungs and stop them developing properly before birth.

Most babies affected by the condition will have a hole in the left side of their diaphragm, and it's more common in boys than girls.

But diaphragmatic hernias are very rare, occurring in one in around 2,500 babies, according to Great Ormond Street Hospital.

They'll often be diagnosed by a routine ultrasound scan during pregnancy, or soon after birth if a baby shows signs of breathing difficulties.

Doctors will then carry out an operation to repair the hernia once the baby's heartrate and breathing are stable.

The new-born was hooked up to machines and wires to keep her alive – where she lay for 12 days.

Aysen said: "When you would walk into the room everyone knew she was a fighter.

"This girl was fighting a lot more than what was visible.

"But despite all the wires, everyone could see she had a very sweet personality already.

"She was very sassy, and she would fuss at the nurses."

On August 12, Aysen and Jacob were heading home from the hospital for the night when they were called back into the room.

Aysen recalled the moment "none of the doctors or nurses would make eye contact" as the new parents walked back in.

She said: "I don't know what I was expecting but for them to tell me my daughter had passed wasn't one of them.

"They said they did everything they could, but she just couldn't fight any more.

"It didn't register at first, then it hit me like a truck, I wasn't going to leave hospital with a baby after all."

Aysen returned to work just six weeks later, instead of becoming a stay-at-home mum as she had planned.

She said: "We grieved differently – I'm a very passionate person and feel very deeply, but men can be quieter and don't share how they feel.

"But we have both worked incredibly hard to make sure our marriage didn't become a statistic after losing Ava. We didn't want that."

Aysen said losing a child is an "incredibly lonely" experience – but it brought her and Jacob closer.

She says speaking about child loss makes people "feel uncomfortable" – and people who supported her during pregnancy drifted.

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"But Ava's legacy was bringing me and Jacob closer," she said.

"We used the grief as motivation to keep going and be better for each other."

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