The U.K.’s shortest couple – two people with different types of dwarfism – were told that their baby wouldn’t survive for long thanks to a “deadly genetic combination.” However, Britain’s only “double dwarf” infant defied expectations and is now a thriving four-year-old who has just started school. And as if that weren’t remarkable enough, in late 2018 the little family welcomed their miracle first son’s baby brother.
Having a baby can be an ordeal at the best of times. But if you risk passing on a condition such as dwarfism, there can be a multitude of complications. Laura and Nathan Phillips, who live in Sunderland, England, have two different forms of the condition. Laura’s type, called achondroplasia, is a more common form of dwarfism than her husband’s pseudoachondroplasia.
The other type is disproportionate short stature (DSS), which results when there is a problem with the development of a person’s joints and bones. This can affect all parts of the body or manifest itself in the growth of individual limbs. And both Laura and Nathan’s conditions are, despite their differences, types of DSS dwarfism.
As a result of their conditions, Laura and Nathan have some other physical hurdles to overcome too. Laura has a curved spine, for instance, and this causes considerable discomfort. Nathan’s condition, meanwhile, affects his hips and in turn means that he walks a “little unusually,” his wife has explained. Nonetheless, the couple are keen to stress that physical difficulties aside, they are just like everyone else.
Going into more detail, Laura’s dwarfism – achondroplasia – is the technical medical term for “without cartilage.” According to the National Organization for Rare Disorders, the condition results in a large head, short arms and a general lack of growth. Those affected each usually attain an adult height of about 4 feet. Brain function, meanwhile, is generally unaffected, and lifespan is close to normal in most cases.
Historically, however, there was very little care or sympathy for those who have dwarfism, whatever its form. For example, back in the 1860s, some people with the condition were paraded as part of “freak shows” and called midgets. Now, though, according to the Little People of America (LPA), this latter term is considered out of date and unwelcome. Dwarf and little person are both acceptable terms, says the group, but most people just want to be called by their names rather than referred to in line with their size.
This was certainly the case for Laura. As her dad, Dave Whitfield, told magazine the Radio Times in 2016, he and his partner hadn’t found out about their daughter’s dwarfism until after her birth. And although it wasn’t obvious at first that there was anything out of the ordinary, Laura’s mother had, while cuddling her little girl, had an inkling that there might be an issue. Then a short time later, Laura’s achondroplasia was diagnosed.
Website BabyGaga does, however, give an insight into how pregnancy can impact a woman with a smaller frame. The article in question in fact cites 15 ways in which the experiences of such women can be different. There is the chance that a dwarf mother can carry a normal-sized child, for instance, which presents obvious issues. Indeed, the website points out that if you have a smaller frame, growing babies in itself can be “dangerous.”
So when you think that most mothers who are of considerably shorter-than-average height weigh perhaps about the same as a child, then giving birth can be a “scary scenario,” according to BabyGaga writer Erynn Burkhalter. And in her November 2017 article, Burkhalter explains that a mom-to-be can gain up to 30 pounds of added weight. Which of course can put considerable strain on a smaller skeleton.
With all this said, a child being born with dwarfism occurs in around just one in 25,000 births. And if parents have different strains of dwarfism, as in Laura and Nathan’s case, then there is a one-in-four chance that the child will have either one or other of the dwarfism types. In such instances, there is also a 25 percent chance that the child will inherit both conditions, as the Phillips’ baby did – becoming the only known U.K. case of double dwarfism.
Yet the wedding is only half of the story. Not long after they agreed to get married back in 2013, the couple had learned the overwhelming news that they were going to be parents. But because of their different dwarfism types, the pregnancy didn’t progress as easily as they would have wanted. In fact, scans made them aware that all was not well with the baby.
As Laura told newspaper the Daily Express, “I was having scans once a week because they were a little worried there could be complications. It wasn’t until 24/25 weeks that things started changing. They noticed that his measurements weren’t quite what they should be. They thought that he had inherited two rare genes that could have been dangerous.”
In fact, doctors were so concerned when they found out that the baby had double dwarfism that they urged Laura to have an abortion. The condition can, you see, often be fatal, and affected babies usually only live for hours after birth. This mortality rate is due to various issues – including the size of the baby’s upper body and neurological concerns – and together these make the odds of such infants surviving very low.
Most babies who inherit this “deadly combination of genes” don’t make it. Laura decided against an abortion, however, as she and her husband already felt utterly devoted to their tiny son. So she vowed to see how far she could get with the pregnancy and, in the face of all medical advice, told herself that it would be okay.
What’s more, in spite of having to face the very real chance that their child might not survive long after birth, Laura and Nathan Sr. decided that it was worth doing all over again. So, in July 2018, having already had one miracle baby, Laura and her husband attended a 24-week scan of yet another incredible bundle of joy. They also told reporters that they were excited and hoping things would “be relaxed and smooth.”
What did the scan reveal? Well, although there were no definitive results, both parents believed it showed strong signs that their developing son had a form of dwarfism. Laura told reporters, “He definitely looked like how Nathan Jr. did on his scan. You could see features of achondroplasia, my condition, straight away. With achondroplasia, we don’t have the bone in our nose, and then our forehead comes out.”
The couple also said that while the unborn child appeared to have some form of dwarfism, there was again the chance that he could have both forms, like his brother, and be a second double dwarf. In July 2018 Laura explained how she was fully prepared for all possible outcomes – but it was a waiting game.