{"id":169328,"date":"2017-07-21T12:04:48","date_gmt":"2017-07-21T16:04:48","guid":{"rendered":"https:\/\/www.liveaction.org\/news\/?p=169328"},"modified":"2017-07-22T12:52:57","modified_gmt":"2017-07-22T16:52:57","slug":"baby-girl-dwarfism-not-expected-survive-birth-turned-two","status":"publish","type":"post","link":"https:\/\/archive.liveaction.org\/news\/baby-girl-dwarfism-not-expected-survive-birth-turned-two\/","title":{"rendered":"Born with a rare dwarfism, ‘Thumbhelena’ wasn’t expected to survive. Now, she’s two."},"content":{"rendered":"
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During a routine ultrasound, Australian couple Jakob Lang and Jaime Jenkins were shocked to learn that their preborn daughter was not growing properly. Advised to abort their baby, even as far along as 34 weeks gestation, Lang and Jenkins refused and were told to prepare for their baby not to live long after her birth.<\/p>\n

But now, that little girl has celebrated her second birthday.<\/p>\n

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Helena and her mom shortly after birth.<\/p><\/div>\n

“I thought it was something I must have done but as the weeks passed, we were faced with even more devastating news,” said Jenkins<\/a>. “Helena didn’t have any lung tissue in her lungs and at 34 weeks I was advised to terminate. I could feel her kicking and we’d already named her; there was no way I couldn’t give her a chance at life.”<\/p>\n

Nicknamed “Thumbhelena,” Helena Lang came into the world a fighter, dying three times while in the neonatal intensive care unit. She was diagnosed with diastrophic dysplasia dwarfism, a rare, genetic form of dwarfism. Each of her parents carries a gene for the condition, giving them a 25% chance of any of their\u00a0children being born with dwarfism.<\/p>\n

“We all said our final goodbyes and waited for the dreaded call that she had gone, but she refused to give in and has since gone from strength to strength; she really is a little fighter,” said Jenkins.<\/p>\n

Helena was in the NICU for three months before she was finally able to go home with her parents. She continued to visit the hospital each month for checkups, dealing with a cleft palate, scoliosis, and more. Eventually, it was revealed that while her organs were growing at a normal rate, her body was not growing enough to accommodate them. Her heart and major vessels were strangling her airway, further complicated by scoliosis compressing on her back. Doctors in Australia had run out of ways to help her. That’s when her parents turned to doctors in the United States who specialize in diastrophic\u00a0dysplasia, and in October 2016, the family of three traveled<\/a> to the state of Delaware to see if Helena needed surgery to relocate blood vessels and arteries and attach the heart to the breastbone so that as she grows, her heart will grow away from her airway.<\/p>\n

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