They can read the article in full after signing up for a free account. She recalled that when Claire was born, the doctor told her and her husband Scott to sign a Do Not Resuscitate (DNR) form so that when the child died, she could "just let her go". Associated With. For children with such profound disabilities, her daughters have beaten the odds. With fears over the Zika virus causing countries like Colombia and Brazil to advise women to delay pregnancy until they get the virus under control, all of the sudden the Hartleys find themselves the object of people's growing curiosity — and mounting fears — about microcephaly, which causes babies to be born with tiny brains. Both were born with microcephaly, the birth defect spreading like wildfire across South America along with the Zika virus. Both were born with microcephaly, the birth defect spreading like wildfire across South America along with the Zika virus. Because they make it look beautiful. The Hartley Hooligans are a pair of sisters, Claire and Lola Hartley, born with microcephaly, a medical condition which is signified by a head circumference several standard deviations below the average. "The bath chairs, sitters, standers, stander/sitters, walkers, scales, wheelchairs, double wheelchairs.". "I would tell the mothers who have newly diagnosed babies that they can Her younger sister, Lola, also has microcephaly. When Claire Hartley, 12, was born, doctors diagnosed her with microcephaly. ", SPH Digital News / Copyright © 2020 Singapore Press Holdings Ltd. Co. Regn. Claire has microcephaly, a condition in which a baby is born with an abnormally small head and brain. Reports of cases in Brazil indicate that many of the children are severely affected. "I remember thinking after we had Claire that we'd have the 'perfect' family because we'd have this new house, a boy, a girl and a couple of dogs, and life would be exactly what we planned. they had.". Her life is beautiful and fun, with a bit of sadness here and there. For the two sisters, everything from eating, moving, grasping things and making eye contact has been difficult. Experts say the prognosis for the child can vary widely depending on the cause of the microcephaly, which can also be a result of a premature fusing of the joints between the bony plates that form an infant's skull and decreased oxygen to the fetal brain. But for up to 4,000 babies in Brazil, microcephaly is said to be linked to the Zika virus, which is carried by the Aedes mosquito. September 2018; Molecular Neurobiology 56(6) DOI: 10.1007/s12035-018-1358-4. When Claire was born, they were told she wouldn't live more than a year. The sisters, both of whom have various other medical conditions due to their microcephaly, have become infamous on the Internetfor their physical deformities as well as what is seen as an exploitative attitude from their parents. Special Report: Zeroing in on the Zika virus, WHO moves into high gear to combat Zika, microcephaly: Expert, https://www.youtube.com/watch?v=EGMJwxqR-Jc. Microcephaly is a rare condition that is only reported in 1 in 25,000 babies in Australia. Gwen Hartley married her high school sweetheart Scott and had three children, Cal, Lola and Claire who are 17, 14 and 9. And although she's always been a tough-as-nails and funny-as-hell advocate for her two precious daughters, she told the Washington Post she finds the new attention both scary and "extremely painful.". Lola, too, has microcephaly, as well as dwarfism, epilepsy and other conditions which have severely affected her development. Both she and her older sister, Claire, have microcephaly caused by an Asparagine Synthetase Deficiency. Some children with small heads have normal intelligence. Claire and Lola Hartley weigh a combined total of 42 pounds and suffer from daily seizures, but Gwen wants everyone to know that a microcephaly diagnosis doesn't mean a death sentence. Mrs Gwen Hartley with her daughters, who have microcephaly. "We were floored that it happened a second time. The girls also go through a gamut of therapies, with a physical therapist, an occupational therapist, a vision teacher and a speech and technology teacher visiting the Hartley home every week. 2020 Bustle Digital Group. It was very hard to adjust to the fact that we'd be the parents of not one, but two special needs children. Until we resolve the issues, subscribers need not log in to access ST Digital articles. Meet the Hartleys. That can often lead to stares from strangers and rude remarks, so the love the girls are getting from the basketball team is extra meaningful. To go grocery shopping, the Kansas mum needs to arrange for a baby sitter; to get a full night's rest, they have engaged a night nurse for the past few years; and to go anywhere with her two daughters requires both parents. She wants people to know her daughters are beautiful blessings and that they don't need to feel sorry for her or her family. By registering, you agree to our T&C and Privacy Policy. (a–c) Family V: The proband, II-4 (a), and his brother, II-2 (b), both show microcephaly, high nasal bridge, upslanting palpebral fissures and a short columella. Lola died yesterday, 10/12/19, at age 13. She shares her dreams, like a recent one she had where Lola could walk. When the family felt settled into their routine and ready to welcome another child into their lives, they were told that the chance for microcephaly reoccurrence was 25 percent. But our family was still perfect. Microcephaly is coming in to focus again, this time not only i n the scienti fi c commun ity, b ut also in the general publi c, due to the current epidemic of the Zika viru s, and In 2006, Mrs Hartley had a second daughter, Lola Grace. Hartley spoke with Romper to share just what it's like to have children with microcephaly. I never want to forget them," she said. In her reply to The Straits Times, she said they have learnt to live "in the now" and to take less for granted. She had microcephaly caused by a neuro-metabolic disorder called Asparagine Synthetase Deficiency. The two girls require 24-hour care. The virus has since spread to more than 20 countries in Latin America. While researchers have not found a definitive link between Zika and fetal brain damage, reported cases of microcephaly have risen sharply in Brazil, ground zero for Zika. If your child has microcephaly, it’s easy to get caught up in looking after her. But Hartley’s priorities shifted in those 12 months. She has almost 17,000 photos on her smartphone, all backed up. And so it did, initially, for a family near Wichita that experienced it — twice. The gift link for this subscriber-only article has expired. For Claire and Lola, the cause of microcephaly is genetic. But the feisty mum and former teacher still finds time to write about the daily travails of their family on her blog, The Hartley Hooligans. Until recently, Gwen's been quietly blogging about her Claire and Lola's special needs. Both Ms Hartley and her husband are believed to carry a rare gene which caused it. Born to Gwen and Scott Hartley, a glass blower, she had two siblings, an older brother and a younger sister. Share gift link below with your friends and family. I bawled," said Mrs Gwen Hartley, 41, who is from Kansas in the United States. The blog documents the Hartley's lives as they manage her and her sister's microcephaly. Their eldest Cal was born healthy 14 years ago. For Mrs Hartley, who remembers how anxious she felt during Claire's first year, the prospect of losing her two daughters is far more daunting than living with their conditions. To many, having a child with a birth defect called microcephaly might seem to be the end of the world. Mr Hartley, formerly a teacher, now works as a glass blower. He works six days a week but is still very involved with caring for their children, she said. And she talks with raw honesty about her frustrations and struggles — something moms facing a microcephaly diagnosis would definitely find healing and helpful. Kansas Parents of 2 Girls With Microcephaly Share Joys, Struggles of Family Life. We have been experiencing some problems with subscriber log-ins and apologise for the inconvenience caused. Meet two Kansas moms who are raising kids with the birth defect. No. What causes microcephaly in a child? For the Hartleys, much of this is paid for with private and public health insurance, and help from special needs organisations. They have an older son Cal, 17, a straight-A student and basketballer. Microcephaly cases are spiking in South America, potentially linked to the Zika virus. All rights reserved. The youngest member of the Hartley family, she is one of the subjects of her mother's family blog The Hartley Hooligans. The special equipment they need for daily life is, in their mum's words "out of control". Hartley writes about her family's life on a blog called The Hartley Hooligans. Get unlimited access to all stories at $0.99/month for the first 3 months. The sleep deprivation that new mothers go through is something she has experienced for more than a decade. A Kansas family is mourning the loss of their 13-year-old daughter who was born with a rare condition. Gwen and Scott Hartley know that their daughters are different. The chance of the condition occurring in their children is 25 per cent. Pretty much like every other family you know. They said she would die of pneumonia. Scott and Gwen Hartley shared on their Facebook page, The Hartley Hooligans (Courtesy of Gwen Hartley… Their brother Cal is Superman. Before Fame. While other parents look forward to their children's first steps or words, she had to fight for Claire and Lola to stay alive. "I am sad that so many babies are being born with microcephaly, but they are the cutest little babies I've ever seen... My hope is that support can come to those families whose babies are affected," Mrs Hartley said when asked about the cases in Brazil. But a log-in is still required for our PDFs. "We cherish things like eye contact, grasping our finger, smiles, weight bearing through their legs, head control - everything we took for granted with our son," she said. But Claire survived, even though she also suffers from dwarfism, cerebral palsy, epilepsy and scoliosis. I am not saying this is the answer for every child, but for our daughters, this natural route... feels right.". Gwen Hartley has stories to share about raising two daughters with microcephaly, the condition that has been linked to the Zika virus. In an e-mail interview with The Straits Times, she spoke of the joy, and pain, of living with two children affected by the condition. Other causes include infections like German measles and chicken pox, exposure to drugs, alcohol or toxins, and severe malnutrition. Zika and microcephaly: What is happening to the babies? Claire is dressed in a Wonder Woman outfit, while the diminutive Lola was a pint-sized Incredible Hulk. Most children with microcephaly also have a small brain and an intellectual disability. what it's like to have children with microcephaly, Hartleys find themselves the object of people's. Both are small - Claire is the size of a toddler (about 10kg) and Lola a three-month-old baby (5.4kg). To many, having a child with a birth defect called microcephaly might seem to be the end of the world. Her mother, Gwen, began The Hartley Hooligans in 2011. The outbreak has thrown the spotlight on what it is like living with microcephaly, for both the sufferers and their caregivers. They suffer a large degree of brain tissue loss, have smooth brains and smaller cerebellums, which play a role in motor control, The New York Times reported. And we were terrified of losing both of them," she told The Straits Times. "When he comes home, no matter how tired he is, he immediately steps in and helps care for the girls.". Neither can walk, talk or do many of the things other children take for granted, but they have also led longer and healthier lives than doctors thought they would. All rights reserved. You have reached your limit of subscriber-only articles this month. 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