Latest news with #heartbeat
The Guardian
17-07-2025
- Health
- The Guardian
‘We'd never heard of it': a woman tells of daughter's death from mitochondrial disease
When I had my 20-week scan, Lily had a strange heartbeat. It would beat and then stop and then start beating again. The sonographer had never seen it before. I was referred by my local hospital to St George's to see a specialist and it happened again. I went back every day for a week, and then every other day for another week, but they never saw it again. I had another scan nearer Lily's due date and that time there was no blood flow between the placenta and the baby. I had to have an emergency caesarean. That was at 35 weeks. She was so tiny, 3lb 8oz, but they couldn't find anything wrong with her. After four or five weeks I was allowed to bring her home. She wasn't putting on weight. One day, when she was about seven weeks old, I was out with the kids for the day, and when I took her out of the pushchair she had stopped breathing, she was grey and foaming around the mouth. We got her to a hospital and she started breathing again. She was discharged, but a friend of mine who's a paediatric nurse advised me to take her to East Surrey hospital, where she was born and they had all her notes. We were there for 10 days while they did more tests. The doctors thought she might have a metabolic disease and blue-lighted us to the Royal Brompton to see a specialist. They agreed, but we were allowed home. We had to get a taxi back and on the way Lily stopped breathing again. I had a nurse with me who performed CPR. Lily had two cardiac arrests a couple of nights later at East Surrey and ended up at Evelina children's hospital on life support. Lily had a lumbar puncture and some more tests. They strongly suspected she had mitochondrial disease. We were told: 'I'm really sorry, there's no treatment, there's nothing we can do, Lily's going to die.' We had a muscle biopsy to confirm the diagnosis but they didn't think the result would come back before she died. Lily didn't die when they turned off life support. We took her home and she survived for six months. I used to sit up in bed with her on my tummy because I was so frightened of waking up and her not being here. I couldn't bear the thought of her being on her own. We had never heard of mitochondrial disease. After Lily died, we asked for donations instead of flowers at her funeral and there was nowhere to send them. There was no active charity dedicated to mitochondrial diseases. We thought, it's never going to change unless we do something. We just did it, we set up The Lily Foundation. We knew that in order to treat it or to find a cure, we had to be able to diagnose it properly. So we raised money for a gene-testing programme. That was a hugely successful project and it's now a routine test for mitochondrial disease. The charity has now raised more than £11m and supports more than 1,300 families and patients across the UK. Our website is full of information and we run annual meet-ups for families, for adults and for young adults. We have closed Facebook groups that bring people together. People go on there for practical advice and support as well. For parents to have an opportunity to have a baby free of these diseases that's genetically theirs, what they have done in Newcastle is not only an incredible piece of science to be celebrated, but an amazing step forward for families. It is such a tightly regulated, robust process from beginning to end, and that's something we should be extremely proud of. There will always be learning. It's a new technique and I hope it opens doors for more in the future. This is about giving families a choice when every other option has been ruled out.
The Guardian
16-07-2025
- Health
- The Guardian
‘We'd never heard of it': a woman tells of her daughter's death of mitochondrial disease
When I had my 20 week scan, Lily had a strange heartbeat. It would beat and then stop and then start beating again. The sonographer had never seen it before. I was referred by my local hospital to St George's to see a specialist and it happened again. I went back every day for a week, and then every other day for another week, but they never saw it again. I had another scan nearer Lily's due date and that time there was no blood flow between the placenta and the baby. I had to have an emergency caesarean. That was at 35 weeks. She was so tiny, 3lb 8oz, but they couldn't find anything wrong with her. After four or five weeks I was allowed to bring her home. She wasn't putting on weight. One day, when she was about seven weeks old, I was out with the kids for the day, and when I took her out of the pushchair she had stopped breathing, she was grey and foaming around the mouth. We got her to a hospital and she started breathing again. She was discharged, but a friend of mine who's a paediatric nurse advised me to take her to East Surrey hospital, where she was born and they had all her notes. We were there for 10 days while they did more tests. The doctors thought she might have a metabolic disease and blue-lighted us to the Royal Brompton to see a specialist. They agreed, but we were allowed home. We had to get a taxi back and on the way Lily stopped breathing again. I had a nurse with me who performed CPR. Lily had two cardiac arrests a couple of nights later at East Surrey and ended up at Evelina children's hospital on life support. Lily had a lumbar puncture and some more tests. They strongly suspected she had mitochondrial disease. We were told: 'I'm really sorry, there's no treatment, there's nothing we can do, Lily's going to die.' We had a muscle biopsy to confirm the diagnosis but they didn't think the result would come back before she died. Lily didn't die when they turned off life support. We took her home and she survived for six months. I used to sit up in bed with her on my tummy because I was so frightened of waking up and her not being here. I couldn't bear the thought of her being on her own. We had never heard of mitochondrial disease. After Lily died, we asked for donations instead of flowers at her funeral and there was nowhere to send them. There was no active charity dedicated to mitochondrial diseases. We thought, it's never going to change unless we do something. We just did it, we set up The Lily Foundation. We knew that in order to treat it or to find a cure, we had to be able to diagnose it properly. So we raised money for a gene-testing programme. That was a hugely successful project and it's now a routine test for mitochondrial disease. The charity has now raised more than £11m and supports more than 1,300 families and patients across the UK. Our website is full of information and we run annual meet-ups for families, for adults and for young adults. We have closed Facebook groups that bring people together. People go on there for practical advice and support as well. For parents to have an opportunity to have a baby free of these diseases that's genetically theirs, what they have done in Newcastle is not only an incredible piece of science to be celebrated, but an amazing step forward for families. It is such a tightly regulated, robust process from beginning to end, and that's something we should be extremely proud of. There will always be learning. It's a new technique and I hope it opens doors for more in the future. This is about giving families a choice when every other option has been ruled out.
Yahoo
10-07-2025
- Health
- Yahoo
‘Incredibly moving' app lets you feel your unborn baby's heartbeat through your phone
It's making waves! A new AI-powered app is giving expecting parents the chance to literally feel their unborn baby's heartbeat through gentle vibrations on their phone. Trellis Health's 'heartbeat feature' might sound spookily futuristic, but it delivers the opportunity for parents-to-be to experience their baby's pulse in their palm anytime they like. 'This feature offers a deeply emotional and tangible way for members, and their families, to connect with their baby during pregnancy, something that has traditionally been limited to fleeting moments in a clinic or sonogram room,' Estelle Giraud, CEO and co-founder of Trellis, told The Post. 'Feeling your baby's actual heartbeat, synced in real time through gentle vibrations, creates an intimate bond that helps make the pregnancy experience more real and present, especially in the early months when physical signs are subtle.' Giraud said the feature offers 'peace of mind' to parents feeling anxious between doctor's appointments. The doctor sends the ultrasound to Trellis for use in the app. 'It's a haptic loop to the beat of the recorded fetal heart rate directly from the ultrasound,' Giraud explained. 'The member taps the heart icon in the individual ultrasound, and the loop will continue until deactivating with another tap.' Any ultrasound that includes a fetal heartbeat can be used — though Giraud noted that 'earlier in-pregnancy stage ultrasounds do not always report a fetal heartbeat, but this doesn't mean that there isn't one.' The app, which launched on May 20, costs $96 a year. The Seattle-based health tech startup aims to address 'glaring gaps in women's health,' such as high maternal mortality rates, 'nearly nonexistent' postpartum care and an 'overwhelming and fragmented' healthcare experience. The app includes a straightforward, comprehensive view of your health history, help with questions to ask the doctor and easy access to midwife support. Recent adopters of the heartbeat feature seem to be impressed. Giraud said that 'the reactions have been incredibly moving,' with many parents describing it 'as a critical moment of connection to their baby.' 'Family members have also been deeply impacted, being able to hold and feel the baby's heartbeat has helped them feel more involved in the journey,' she added. 'We've heard everything from, 'I cried the first time I felt it' to 'It brought my partner and me closer to the pregnancy in a way we didn't expect.''
Yahoo
28-06-2025
- Health
- Yahoo
Husband's Attempt at Humor During Ultrasound Backfires. Now He Is ‘Banned' from Speaking in Other Appointments
A husband decided to accompany his wife to her ultrasound appointment The pair were excited to hear their child's heartbeat for the first time However, the wife and doctor were not amused by the husband's joke after hearing the soundExpecting a child is one of life's most emotional and transformative experiences. For one Reddit user and his wife, both 31, the journey to parenthood took an unexpectedly awkward — yet humorous — turn during a routine ultrasound appointment. What began as a joyful, exciting day quickly became a moment of comic misfire that will likely be remembered for years to come. 'We went in for the 12-week scan. Everyone's in a good mood, the tech is sweet, and everything looks great,' the soon-to-be dad writes in the post, setting the stage for what was supposed to be a tender milestone in their pregnancy journey. But then came the moment that often brings tears to parents' eyes: the first sound of the baby's heartbeat. 'She puts the wand over my wife's belly, and the room goes quiet. Then: Lub dub. Lub dub,' he recalls. It was then, caught up in the emotion and the surreal quality of the moment, that the expectant father said what he thought would be a lighthearted comment to break the silence. "Without thinking, I blurt out, 'Sounds like a tiny rave in there,'' he recalls. Unfortunately, his attempt at humor didn't land. 'No one laughs. Not the tech. Not my wife,' he recounts. 'The tech just says flatly, 'It's a heart, not a party.' My wife, God bless her, gives me that 'please stop breathing for a second' look.' The silence that followed was deafening. What was meant to be a bonding moment through shared laughter turned into a lesson in timing — and the unwritten rules of ultrasound etiquette. Recognizing the situation, the dad decided to stay quiet for the rest of the appointment. Although no one found his comment funny at the moment, Reddit users flooded the comments in support of the poster. 'Ehhh they just don't have a sense of humor, that's pretty funny,' one person commented. 'Dad joking it up before you are officially a dad.' The fallout, however, didn't end at the clinic. Later that night, his wife sent him a text from another room. 'Tiny rave. Really?' she asked. The poster noted that he has since been 'permanently banned from speaking during future appointments." While the joke didn't garner any laughs, it did lead to an unofficial nickname for their future son. 'We're naming the baby Oliver,' he writes, 'but I know the real nickname will be DJ Heartbeat.' In the end, this expectant father learned a valuable — and slightly embarrassing — lesson: sometimes, the best thing to say during a poignant moment is nothing at all. Still, it's clear that his heart was in the right place, even if his timing was not. Read the original article on People
Yahoo
28-06-2025
- Health
- Yahoo
Husband's Attempt at Humor During Ultrasound Backfires. Now He Is ‘Banned' from Speaking in Other Appointments
A husband decided to accompany his wife to her ultrasound appointment The pair were excited to hear their child's heartbeat for the first time However, the wife and doctor were not amused by the husband's joke after hearing the soundExpecting a child is one of life's most emotional and transformative experiences. For one Reddit user and his wife, both 31, the journey to parenthood took an unexpectedly awkward — yet humorous — turn during a routine ultrasound appointment. What began as a joyful, exciting day quickly became a moment of comic misfire that will likely be remembered for years to come. 'We went in for the 12-week scan. Everyone's in a good mood, the tech is sweet, and everything looks great,' the soon-to-be dad writes in the post, setting the stage for what was supposed to be a tender milestone in their pregnancy journey. But then came the moment that often brings tears to parents' eyes: the first sound of the baby's heartbeat. 'She puts the wand over my wife's belly, and the room goes quiet. Then: Lub dub. Lub dub,' he recalls. It was then, caught up in the emotion and the surreal quality of the moment, that the expectant father said what he thought would be a lighthearted comment to break the silence. "Without thinking, I blurt out, 'Sounds like a tiny rave in there,'' he recalls. Unfortunately, his attempt at humor didn't land. 'No one laughs. Not the tech. Not my wife,' he recounts. 'The tech just says flatly, 'It's a heart, not a party.' My wife, God bless her, gives me that 'please stop breathing for a second' look.' The silence that followed was deafening. What was meant to be a bonding moment through shared laughter turned into a lesson in timing — and the unwritten rules of ultrasound etiquette. Recognizing the situation, the dad decided to stay quiet for the rest of the appointment. Although no one found his comment funny at the moment, Reddit users flooded the comments in support of the poster. 'Ehhh they just don't have a sense of humor, that's pretty funny,' one person commented. 'Dad joking it up before you are officially a dad.' The fallout, however, didn't end at the clinic. Later that night, his wife sent him a text from another room. 'Tiny rave. Really?' she asked. The poster noted that he has since been 'permanently banned from speaking during future appointments." While the joke didn't garner any laughs, it did lead to an unofficial nickname for their future son. 'We're naming the baby Oliver,' he writes, 'but I know the real nickname will be DJ Heartbeat.' In the end, this expectant father learned a valuable — and slightly embarrassing — lesson: sometimes, the best thing to say during a poignant moment is nothing at all. Still, it's clear that his heart was in the right place, even if his timing was not. Read the original article on People
