The post Babies shouldn’t die of a broken heart, says Hudson Initiative appeared first on All4Baby.
]]>Around 1 in every 100 babies is born with a heart defect, and in South Africa, many of those go undetected. It’s estimated that at least one in every five babies who dies of Sudden Infant Death Syndrome (SIDS) was an undetected CHD sufferer – but it doesn’t have to be that way.
Cardiac surgeon Professor Robin Kinsley says advances in paediatric cardiology and cardiac surgery have made it possible for survival into adulthood for the majority of babies born with congenitally malformed hearts, but this is not the case on the African continent.
“Here, this is a dream as roughly 280 000 neonates born every year on the continent are left untreated, demonstrating the natural history of the congenitally malformed heart by default,” he says. “This is due in point to lack of finances, lack of locally developed personnel and proper understanding of the problem.”
The statistics get scarier when you hear that globally, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.
The Hudson Initiative faces a long, arduous road – one that is starting with awareness, will encompass a growth in research funding and the collection of funds to help families who cannot afford the surgeries needed to help their babies, and will end in the creation of Hudson’s Law.
To explain the end goal, detecting CHDs is as simple as administering a test, called Pulse Oximetry, which measures how much oxygen is in a baby’s blood, after the baby is 24 hours old. This dramatically increases their chances of survival, says Andrea Slater, the driving force behind The Hudson Initiative.
“This is the most important part of our focus: We’re going to make sure that screening for heart defects become as normal a scan as the Downs Syndrome check at 20 weeks. We’re going to make sure that Pulse Oximetry tests are performed on all newborn babies before they are sent home. And we’re going to make sure that the terms CHD and congenital heart defect is no longer foreign or misunderstood,” says Slater.
“If mothers are armed with the information they need to protect their babies from CHD-related issues, these deaths could potentially be avoided. CHDs are scary but they’re not the end. CHD babies live. They thrive. Post-surgery, hope is very much alive.”
Ultimately, the Initiative will realise the introduction of Hudson’s Law, which will see Pulse Oximetry testing becoming compulsory. In the meantime, the initiative is raising money to fund CHD awareness campaigns and pay for Pulse Oximetry testing in infants. The long-term goal is to pay for surgeries needed by babies whose families who cannot afford them.
Interested parties can sign a petition and spread the word by visiting www.hudsoninitiative.org. They can also be part of the social media campaign using the #JustAsk hashtag, which prompts expectant mothers to do three things:
“Our journey with Hudson was a very real, very painful, very testing and an extraordinarily fulfilling one. We like to think he chose us because he knew we would do something to address the concerning statistics around the sheer number of babies who are sent home with undiagnosed CHDs. We’re going to change things on behalf of the boy who changed our world.”
About the Author: Andrea Slater is mother to a CHD angel and all she wants is to help other tiny people get a fighting chance in this life. Readers are welcome to visit her blog for more on Hudson’s journey. For more information visit www.hudsoninitiative.org
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]]>The post Born at 25 weeks, a story of hope appeared first on All4Baby.
]]>“This was our first child and we were very excited from the beginning. We had wanted to have a child for a long time. It felt like a miracle from the start, but I was naïve about what was going to happen later on. In my mind it was all going to work out perfectly, I was going to have a normal birth and breastfeed without any problems.All the signs up to that point showed everything was well,” says Tanya.
“But when the pain didn’t go away and I started bleeding, I knew something was wrong,” she says. Tanya and her husband, Davy, went to the hospital where their gynae did a physical exam and a scan and confirmed everything was in order.
But the pain escalated through that night and her instincts told her all was not well.
“I woke up early the next morning, but I was so weak I could hardly move. The pain was intense and I could feel the baby moving down into the birth canal. I knew I was in labour, I knew the baby was coming,” says Tanya.
“He was crowning in the car and I kept saying to Davy, ‘drive faster, drive faster’. Although we were only 10 minutes away from the hospital, it felt like the longest drive ever. I closed my eyes so I couldn’t see how far we still had to go.”
“We arrived at the hospital and I stood beside a pillar in the entrance and shouted for someone to help me. I had to keep my legs together to keep the baby from coming out.”
It wasn’t until the staff of the maternity unit saw the baby’s head that they realised Tanya was in an advanced stage of labour. The baby was delivered straight away, with one push.
“I looked at the faces around me in the delivery room and I saw expressions of sorrow and regret.” They looked at Davy, who was distraught and very emotional. The looks implied ‘I’m so sorry for your loss’. I picked my head up and I saw a tiny blue baby. We were overcome with sadness and anguish, thinking that he had not survived, and seeing his little body lying still, without any movement.
“Everyone was quiet, and the pause in conversation felt very long. Then, out of the blue, this sound came, like a gasp. Kyle had taken a breath. Our despair turned into hope.”
Tanya had suffered a placental abruption, where the placenta (which is the source of nourishment for the unborn baby) becomes separated from the uterus. The cause of the condition is unknown, but Davy recalls: “It was a very painful and traumatic experience – Tanya had labour pains for more than 24 hours.”
Kyle had arrived 15 weeks early, weighing just 700g. A foetus is deemed clinically viable from 26 weeks’ gestation.
“The gynae wrapped Kyle in a hospital gown, and the nurse took him and ran to neonatal ICU, where they resuscitated him. They worked on him for an hour to stabilise him and he was on life support for a day and a half,” says Tanya.
“The doctors gave him a 10% chance of survival. He’d been starved of oxygen and we were warned of the possible complications that could arise in the days ahead, like heart and lung conditions and brain bleeds. The first 48 hours were crucial.”
‘Don’t get your hopes up, expect the worst,’ they said.
“I cried so much when I saw him, he looked so tiny and underdeveloped. He had a drip in his head, a feeding tube into his stomach and two other cords attached to his tiny little feet.”
Kyle’s birth was a life changing experience and it put things into perspective for us. I held onto my faith – not the stats and science – based on that first breath, which I believe was him saying ‘I’m here for a purpose, I am going to fight to live, I am going to hold onto hope, it’s my time’.
“We were totally unprepared. We hadn’t thought of names, done the shopping, or got his room ready or anything. I was depressed those first few days, I blamed myself, and thought if I had done this or that maybe things would be different. But I also knew I had done everything to keep fit and healthy, I have never drunk alcohol or smoked in my life, and so it felt unfair that my baby was suffering.”
“But I had to put these things behind me. I never looked back, I just thought about what my baby needed from me. He needed to draw strength from us.”
Kyle spent three months in neonatal intensive care and has had two heart surgeries already.
“From the beginning, we knew we needed to prepare for complications. After a few weeks, Kyle became very ill and the cardiologist picked up some problems. The first was the congenital heart disorder PDA (patent ductus arteriosus) where a connecting blood vessel that is open when the baby is in the womb so that blood bypasses the immature, non-functioning lungs, fails to close at birth. In order to get blood oxygenated, Kyle had to have the gap closed surgically when he reached a kilogram in weight. Kyle was one month old and weighed 900g when this procedure was done.”
The second surgery which was done when Kyle was seven months old and weighed three kilograms, was to open a chamber of the heart that was too small.
Kyle has six-monthly check-ups with his cardiologist, and his third operation, to close the hole in his heart due to atrial septal defect (ASD), is planned for when he reaches 15 kilograms.
“The journey was very stressful and a huge emotional roller coaster for us. Good news and happy moments of bonding always preceded bad news from the doctors, nurses and specialists. Fear, nervousness and despair were common emotions that we experienced, together with pride, joy and hope,” say Tanya and Davy.
“The saying: ‘Where there is life, there is hope’ became our mantra. We never stopped believing that everything would turn out perfectly.”
“The day we brought him home for the first time was the best day of our lives. Our house finally became a home,” they say.
Touched by the Moodleys’ story, the Discovery Health Concierge team reacted to their situation and founded the Premmie Concierge Project, which aims to assist and support parents of babies in the neonatal ICU and beyond.
Although he still has heart defects (atrial septal defect and pulmonary valve stenosis) and poor weight gain, Kyle, who is about to celebrate his second birthday, is an energetic and fun-loving little boy. He learns at least two new words a day. He loves playing with his toy cars, trucks and buses but his favourite pastimes are snuggling up to mommy, playing with daddy and chasing after his cat, Bizzy.
For more information on the Premmie Concierge Project, visit www.discovery.co.za. For more Medical Miracle stories, visit DiscoverySA on YouTube.
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]]>The post Premature twin birth – a real life story appeared first on All4Baby.
]]>She held back on heavy lifting, did only low-impact exercise, ate well and generally looked after herself.
“I honestly expected my twin pregnancy to be much harder than it was. It was a textbook pregnancy. Our boys grew well from the beginning and I was convinced the doctors would have to induce me.”
“Of course, my husband Jon was less naïve than I was and he organised for us to attend a workshop for multiple parents, which included a talk on premature birth, by The Multiple Birth Association. The speaker had had triplets that weighed around 500g at birth. The talk was unsettling, but I was still convinced that our boys would be inside until at least 37 weeks.”
“Suddenly at 33 weeks, we found out that my placenta had started to calcify and one of the babies was not getting the nutrients it needed to grow. I was promptly put on bed rest and my doctor started to scan every two days. The nurses kept asking me if I could feel contractions, but I felt nothing.”
The rest seemed to help and the baby started growing again. But the calcification worsened.
“Jon, ever-practical, made sure my bags were packed and ready, in case we delivered earlier than expected. Thanks to our registration with Discovery’s Vitality Baby, the two goodie bags we received meant that we didn’t need to buy many of the items we needed for our hospital stay. During one of the heartbeat scans, he asked the nurse if we could have a tour of the neonatal ICU, which she arranged for us.”
“This was an eye opening experience and I would recommend it for anyone expecting twins. Seeing the NICU helped us understand all the wires, boxes, beeps and lights in an objective way. We saw how small babies can be born and still survive, for example there was a little girl there who weighed just 600g and was doing well.”
“At 35 weeks exactly, at my latest scan, my doctor did not look happy. He announced that one of the babies now had an umbilical cord wrapped around his neck. He immediately scheduled us for an emergency C-section at Sandton Medi Clinic. My boys, Alexander and Dylan, were born on 21 May 2012, weighing 2.1kg and 2.4kg.”
“It was only eight hours later that I got to see my babies’ faces properly for the first time. They were in NICU for 10 days and it was the hardest time of my life. Despite their healthy weights and the fact that they had reached 35 weeks inside, they were considered premature because they didn’t have a sucking reflex yet. They had to learn to suck before they could be sent home. They were also slightly jaundiced and had to spend quite some time under the lamps. It was a very frustrating time. They were tube-fed formula and I couldn’t breastfeed. I believe not being able to breastfeed them there impacted my milk supply, because even though I took something to help boost supply, I never produced enough to even feed one of them.”
“One thing we did not have to worry about was whether their NICU stay would be paid for. As a Comprehensive Plan Discovery member, both my boys were fully covered for their entire stay at the hospital.”
“The time in ICU wasn’t just hard, it was also rewarding. The nurses put them on a schedule and we learned all the things new parents need to know, from bathing, nappies and other things that many women only get three days of nursing help for.”
“My boys will be turning one soon and they have without doubt caught up with their birth ages. They are an absolute blessing and despite the difficult start, I wouldn’t trade it for the world.”
About the Author:
For more Medical Miracle stories, visit DiscoverySA on YouTube. For more information on Discovery, visit their website www.discovery.co.za .
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