Australians Jaime Jenkins and Jakob Lang were well-matched, it seemed – not least because the pair both measure up at nearly six feet tall. They were devoted to each other, too, and keen to start a family together. However, the couple’s delight when Jenkins fell pregnant was overshadowed by the news they received after the baby’s 12-week scan. And the decision they were left to make would become life-changing.
Jenkins and Lang had first got together back in 2010, when they were both working at a branch of KFC in Sydney, Australia. And after being together for 13 months, they had had plans to get married. Due to the pair’s grueling schedules, however, the relationship faltered; and they would subsequently split up and begin new lives apart. But the exes were eventually drawn back together, united by the memories they had created as each other’s first loves. This was despite the fact that Jenkins was, as she would learn from doctors, unable to have children.
So, as a result, Jenkins and Lang had taken the decision to save up money to pay for IVF treatment. But, as it happened, fate was to intervene in the hopeful pair’s lives. One day, Jenkins would bound into Lang’s arms with a huge smile on her face: she was expecting a child, despite all the odds. Not believing their luck, they excitedly went to the doctors for a scan at about six weeks into the pregnancy. It revealed what Lang would later describe as “one healthy happy little bean.”
Unfortunately, however, the couple’s joy was to be short-lived. A scan at 12 weeks, the end of the pregnancy’s first trimester, raised some serious issues with the fetus. Further tests would also reveal numerous problems with the growth and development of the baby. So, at 34 weeks, medical professionals advised Jenkins and Lang that, in their expert opinions, it was best that they terminate the unborn child’s life.
And although a disbelieving Jenkins and Lang would get second and third opinions from doctors on their baby, all subsequent tests on the fetus showed the same worrying results. In particular, repeated scans revealed that the child – a girl – was suffering from clubbed feet, a twisted spine and underdeveloped limbs and lungs.
Indeed, Jenkins and Lang were even told that their baby’s little lungs would not be able to cope with breathing once she had left the womb. However, undeterred, the couple were committed to welcoming their baby into the world. Even if she were to only take a few breaths before passing away, they felt they had to meet her.
And as the birth date loomed, Jenkins penned some secret wishes for the delivery, due to take place at The Children’s Hospital at Westmead, Sydney. All she wanted was a natural birth, to hear the cry of her baby and to see her newborn in Lang’s arms as he cut the umbilical cord. Then, as baby Helena Estelle Lang came into the world on July 16, 2015, the sound of her cry broke the tension in the delivery room, and everyone present was filled with relief and joy.
In fact, the birth was a complete success. And to Jenkins and Lang’s immense disbelief and excitement, Helena was soon placed in their arms. They happily cradled their newborn amid all manner of tubes and support machines. The couple then had Helena baptized, after which the exhausted parents were ordered to rest.
Jenkins and Lang were also promised that if anything happened overnight to their daughter, they would be contacted by telephone. Indeed, nurses stood by all night monitoring the baby, fearing that she would deteriorate rapidly. But, happily, no tragic call came; morning broke, and Helena had made it through her first night.
After that, the neonatal team at the hospital began diagnostic tests on Helena. The newborn was eventually diagnosed with diastrophic dysplasia – a rare form of dwarfism – which meant that she would never grow to more than about four feet tall.
And, in the end, Helena had to spend three months in hospital. During that time, she suffered from swelling in her ears which partially deafened her; she also had to have congestion removed from her tiny lungs to allow her to breathe independently. Towards the end of the stay, however, Jenkins and Lang were happily surprised to be told that Helena would be allowed home in ten days’ time. The family were about to begin the next stage of their journey.
Before Helena’s birth, though, the young parents had been oblivious that they both carried a rare gene that caused dwarfism. In fact, Jenkins and Lang were downright shocked at the news, given that they are both over average height. And, in fact, not only does Helena have dwarfism, but she lives with the rarest known type of the condition.
So, given their daughter’s diagnosis, Jenkins and Lang would admit to the Daily Mail in 2016 that they would have to think carefully about whether to have another child. Jenkins explained, “I would love to extend our family at some point, but we would need to think about the risks.”
Jenkins continued to the newspaper, “There’s a one-in-three chance that we could have another dwarf, and they could be even more severely affected than Helena.” In the meantime, though, Helena herself has continued to thrive. The happy young girl is now a toddler, in fact, and loved by her family and friends.
And Helena has since developed her own personality and characteristics, just like other children her age. Indeed, Jenkins and Lang are adamant that they made the right decision in choosing not to abort her. The doting father also told the Daily Mail that, at heart, Helena will always be “daddy’s little girl.”
Furthermore, Helena is more likely than not to be found dressed in cute princess clothing. That’s because Jenkins and Lang cope with the heartache and worry caused by their daughter’s condition by allowing her to dress up as prettily as she wants. The little girl has even since modeled for a homemade clothing brand.
Plus, Helena’s amazing and inspiring story has reached others via social media, as her day-to-day life is being documented on Instagram and Facebook by her devoted parents. Through their posts, Jenkins and Lang hope to encourage other families who may be going through the same thing. The thinking is that seeing Helena overcome her obstacles will give others hope that their children can have normal lives, too.
But, of course, Helena’s life hasn’t all been plain sailing. By the time she was one, in fact, her various conditions had left doctors in Australia stumped as to what to do next. Specifically, as well as suffering from diastrophic dysplasia, the little girl had a cleft palate, club feet, a curved spine and an underdeveloped chest cavity.
And Jenkins and Lang knew that these issues might have serious implications for Helena as she got older. So, the couple instigated a fundraising campaign to pay for expert treatment for their child in the U.S. But when the family had reached their target and had traveled to the States for a consultation, Helena would face yet another life-threatening complication with her health.
So, before Helena can travel to America again, she must undergo a laryngotracheal reconstruction to strengthen and widen her airway. That operation, moreover, is due to take place in Sydney. And while sadly her parents are no longer together, they are still united in wanting to see their little girl continue to beat the odds. So, too, it’s fair to say, are many of those who have come across Helena’s inspirational story online.