Sunday, Oct. 19, 2008
A nation-wide campaign in the United Kingdom, aims to honor the heroes of premature babies: doctors, nurses, midwives, paramedics, helpers, and others who toil to save the lives of these feather light special care babies.
The children’s charity Baby Lifeline is behind the campaign. Through their MUM (Maternity Unit Miracles) Awards they hope to honor the unsung heroes of premature babycare.
“Having a baby can be a worrying time, and if there are problems all parents want to know they are in the best hands.
When the odds of life or death are stacking up, the care and expertise on offer can make the world of difference.
That’s why charity Baby Lifeline wants to champion the work of dedicated professionals committed to helping those who don’t always get the best start in life.”
— Judy Ledger, founder
The campaign has received unexpected support form a television star. Kate Ford, herself prematurely born at 4 lbs. and who starred in the popular TV serie Coronation Street, is backing the campaign.
“Giving birth is hard but it’s just as hard for midwives who work round the clock to give the best care possible.
You feel so vulnerable but a good midwife makes you feel safe.
The people who work in these units are unsung heroes and if anyone has had a positive experience giving birth, whether premature or not, this is their chance to say ‘thank you’ for all the fantastic work the staff do.”
— Kate Ford
Wednesday, Jul. 9, 2008
‘A Miracle Baby’ were the best words to describe little Cherie Maguire when she was born in 1990 weighing only 26ozs! Despite an amazing struggle to survive, the now very healthy Enniskillen girl has never looked back. She has just completed her A-levels at St Fanchea’s College and this week, celebrated her 18th birthday.
“Now is a time for reminiscing I suppose,” Cherie’s mother Geraldine told the ‘Herald’ this week.
“And back in those days, you would never have thought Cherie would make 18 at all because it was so touch and go.”
When Cherie, the daughter of Geraldine and Jimmy from Glenwood Gardens, was first delivered at the Jubilee Maternity Unit in Belfast, she fitted neatly into the palm of her mother’s hand while her father could easily slip his wedding ring onto her leg.
It was an anxious and stressful time for Jimmy and Geraldine, and Cherie’s older sister Melissa. The family had lost a baby girl also delivered at 29 weeks, nine months previously, and when problems developed with this pregnancy, consultants at the Erne took the decision to transfer Geraldine to the Royal Maternity Unit. However, when doctors there examined Geraldine they realised Cherie would have to be delivered almost immediately if she was going to have any hope of survival, but with no incubators available at the Royal, Geraldine was transferred to the Jubilee Maternity Unit. The following morning she underwent a caesarean operation and Cherie was brought into the world at 10am weighing 1lb 10ozs.
“She was so tiny and looked so vulnerable and surrounded by so much hi-tech equipment it was hard to believe she had any chance of survival,” Jimmy said at the time.
Geraldine didn’t see her baby until that afternoon and her initial reaction was that she didn’t look like a baby at all, more like a foetus surrounded by a mass of tubes and monitors. She noted that it was unusual for Cherie’s eyes to be open for such a premature baby and they were a striking shade of dark blue, looking huge against the rest of her tiny body. At that initial stage, staff in the unit were not optimistic and held little hope, and Geraldine herself experienced a mix of feelings, both pleasure that Cherie was alive and fear for the future.
“I didn’t want to get too close to her because I thought if she died it wouldn’t hurt so much then.”
Cherie however, was determined to live and became a real little fighter. She overcame feeding difficulties which saw her weight drop to 19ozs, a bowel infection, breathing difficulties and a heart murmur. Gradually, Cherie started to put on weight and three months later was allowed to return home. Having heard the stories from her family and having seen the newspaper clippings marking her survival story, Cherie, an award winning Irish dancer, knows looking back now, that she was, as the headlines suggested, a miracle child.
“I don’t know how I survived to be honest,” she remarked.
Awaiting the results of her A-levels, she is currently working in Flo’s Restaurant in Enniskillen and hopes come September to study for a HND in Health and Social Care at the South West College and progress from there, to study for a degree in nursing at university. And, despite being naturally small, Cherie is now one young, fit and healthy adult.
“I’m very small, just 5ft so I’m very tiny. I have size three feet and wear small clothes.”
Monday, Nov. 12, 2007
Doctors say premature babies have a low rate of survival, but here in Bakersfield, ABC23 found one baby born three months early who’s beating the odds.
Breanne Smith, 19, was overjoyed when she found out she was pregnant with a baby boy. That joy soon turned to fear when she was rushed to the hospital three months early for an emergency C-section.
“It’s really unbelievable how small he is … Like a kitten … tiny,” said Smith.
Branson Smith was born weighing 1 pound 4 ounces in August. Smith said he wasn’t due until December.
She said she developed eclampsia, a condition that creates seizures during pregnancy.
According to the U.S. National Library of Medicine, eclampsia follows preeclampsia, a serious complication of pregnancy marked by high blood pressure, weight gain, and protein in the urine. The site suggests it is difficult to predict which women with preeclampsia will go on to have seizures. Women with very high blood pressure, headaches, vision changes, or abnormal blood tests have severe preeclampsia and are at high risk for seizures.
Doctors said the survival rate of a baby being born three and a half months premature is only 10 percent.
Smith said all she can do is have hope and take it day by day.
Baby Branson is almost three months old now and weighs three-and-a-half pounds.
Smith said if everything continues to go as well as it has, Branson could be headed home on what would have been his birthday.
Monday, Oct. 29, 2007
Eugene – Hundreds of special little children and their parents gathered for a party at Sacred Heart Medical Center Saturday.
From twin babies to toddlers, these children came dressed in their Halloween finest. But it wasn’t just a spooky celebration, it was a reunion!
These kids and their families are celebrating the lives of babies that were born pre-maturely at Sacred Heart’s Neo-Natal Intensive Care Unit. Officials say it’s a way of celebrating the babies growing up healthy and strong.
“It helps them see other babies and how well other babies are doing and it helps parents to meet other parents to connect with each other and get support,” says registered nurse Barbara Johnson.
This is the 30-th annual reunion. The Neo-Natal Intensive Care Unit was established in 1977.
Thursday, Jul. 5, 2007
To many people she is known as ‘The Miracle Baby’ because when she was born 17 weeks premature she was smaller than a soda can.
Now, as Jessica Kartalija reports, little Ryleigh McCormick has beaten the odds and is now growing into a healthy little girl.
Five months after her birth, Ryleigh went back to the hospital where she was born for a routine eye exam.
Doctors at the Greater Baltimore Medical Center weighed Ryleigh in at eight pounds, something they called a miracle in and of itself.
“When she came out, we were thinking that usually babies under 500 grams don’t make it. So we were all kind of thinking she wasn’t going to survive,” said nurse Kelly Reed from GBMC’s Neo-natal Intensive Care Unit.
Reed described caring for Ryleigh saying she helped her with, “breathing, giving her blood products, [and] fluids.” Reed added, “You know, you get to the point where you have to teach them how to eat.”
At birth, Ryleigh’s entire arm was the length of her father’s finger. Her body easily fit inside some of the holiday stockings that were hanging in the McCormicks’ home.
Ryleigh’s parents said their daughter is an inspiration not only for them but also for anyone fighting tough odds.
“It’s been a long journey and she has been my inspiration,” said proud dad Anthony McCormick. “If she can go through what she went through for the past five months, I can accomplish anything.”
“She is a fighter,” said mom Angela McCormick. “It just lets me know that anything in the world is not possible unless you fight for it.”
After birth, Ryleigh McCormick was at GBMC for 115 days.
She is now living a happy and healthy life back at home with her parents and four sisters.
Wednesday, Mar. 28, 2007
A baby born after just 23 weeks is currently “doing well” after spending the first 10 months of his existence battling for his life.
Baby Kaven not only had to endure the trials which come with being born 17 weeks early – he also had to undergo over 50 blood transfusions to keep him alive after he contracted necrotising fasciitis, a flesh-eating organism, at just five days old.
His frame was so frail that within days of being born, the 1lb baby boy had suffered broken ribs, caused by the effort of breathing, and two broken legs after health specialists had attempted to change his nappy.
Speaking to the Daily Mail, proud mum Victoria Simmons admitted that she and partner Lawrence Gainey were incredibly frightened for their little son.
“We had him baptised before the operation, as the doctors didn’t think he would be coming back. We just had to sit and pray that he would hang on.”
Now 10-months-old, Kaven – which means “handsome” in Gaelic – is a much healthier 15lbs and although he will require physiotherapy until he is at least five, Victoria is confident that her son will continue to improve.
“He is so tiny that some people think he is new-born. But he’s doing fantastically well and we are so thrilled with his progress,” she said.
Tuesday, Feb. 27, 2007
A desperately-ill baby was given Viagra by doctors in a last attempt to save his life.
Lewis Goodfellow weighed only 1lb 8oz when he was born 16 weeks premature with seriously underdeveloped lungs.
The male impotence drug worked by opening some of the small blood vessels in the lungs to help carry oxygen around the body in his blood.
Now, after five months in hospital, Lewis is at home with his parents Jade Goodfellow and John Barclay, weighing 10lb 7oz and making excellent progress.
“He really is a miracle baby and we decided we would never give up hope until he had taken his last breath,” said Jade, 17, who lives with Mr Barclay, a lifeguard, in Walker, Newcastle.
“At one point we were told we might have to make a decision about stopping treatment because he was so poorly and we even started to plan his funeral, but everyone prayed so much for him and he pulled through.
“All the nurses, doctors and consultants were fantastic, and when they tried Viagra it was very much a last resort but it worked.
“When Lewis came home it was wonderful. We were able to finally be a proper family and take him out in the pram.”
Lewis was one of the first babies to be given the drug, also called Sildenafil, at the Royal Victoria Infirmary’s special baby care unit in Newcastle.
Alan Fenton, consultant neonatologist at the infirmary, said: “Sildenafil is a fairly new form of treatment which we’ve been using on the unit for around a year.
“It has been used successfully in full-term babies but it is unclear whether it works as well in very premature babies. So far we’ve used it in around six premature babies.” Lewis was due on December 1, but Jade unexpectedly went into labour at just 24 weeks, and her baby was born on August 16.
When Lewis was three weeks old, he needed open heart surgery to correct a faulty valve, but doctors became increasingly worried about his lungs. Although Lewis was being given maximum supplies of oxygen, his lungs were still struggling to get it into his blood supply.
At this point they tried Viagra through a drip and Lewis started to improve. He was still not out of the woods, however, and in November he had laser surgery on his eyes.
Wednesday, Feb. 21, 2007
Amillia Sonja Taylor was born after 22 weeks, weighing less than a bag of sugar. Doctors gave her little chance of life. But now she has been allowed home.
Her tiny transparent feet, covered in gelatinous skin, look like those of some aquatic creature. Her chest, festooned with wires and tubes, covers a heart that pumps up to 80 times a minute. She is the world’s most premature baby known to have survived and, after four months in hospital, she is going home.
Born at 21 weeks and six days gestation, barely half the 37 to 40 weeks normal babies spend in the womb, Amillia Sonja Taylor weighed less than 10 ounces, less than half a bag of sugar. She measured just over nine inches long.
Her doctors at the Baptist Children Hospital in Florida did not hold out much hope. “We weren’t too optimistic but she proved us all wrong. She is truly a miracle baby. We didn’t even know what a normal blood pressure is for a baby this small,” William Smalling, a neonatologist, said.
Premature births as extreme as this carry high risks. Amillia has experienced respiratory problems, a very mild brain haemorrhage and some digestive problems, but none of the health concerns are expected to pose long-term problems, her doctors said. During two months in an incubator, she had plastic surgery to repair an ear torn during delivery.
“We can deal with lungs and things like that but, of course, the brain is the most important,” said Paul Fassbach, a neonatalogist. “But her prognosis is excellent.”
Today, Amillia has grown to a healthy 4lbs, still barely half the weight of a newborn baby, and is 25 inches long. Conceived by IVF, she is the first child of Sonja and Eddie Taylor, from Homestead, Florida, and already the centre of their world. “I am still in amazement. I wanted her to have a chance and I knew in my heart that she was going to make it,” Mrs Taylor, 37, said. “It was hard to imagine she was going to get this far but now she is beginning to look like a real baby. Even though she is only 4lbs now she looks plump to me.”
Premature babies enter the world with immature organs and skin, under-developed lungs and fledgling immune systems. Their first few months are a roller-coaster – doing well one minute, their lives in the balance the next – yet survival rates have improved dramatically. Ten years ago, three-quarters of babies born at 25 weeks died. Now less than half do so.
Amillia’s story is testament to the achievements of modern medicine. But it is also extremely rare. Even today 99 per cent of babies born before 23 weeks gestation die. Less than one in five of those born before 24 weeks survive and of those two thirds have moderate or severe disabilities.
Medical advance has thus created an ethical dilemma. Is everything being done that should be for these babies or is too much being done because it is technologically possible? Progress in neonatal medicine has increased the options for doctors and parents but, because of the risks of death or disability, has made it increasingly difficult for them to know the best thing to do.
There is a worldwide boom in premature babies. The US Institute of Medicine warned in a report last year that premature births were soaring, by almost a third in the last 25 years, putting increasing pressure on health and education services. More than a quarter of babies born before 35 weeks will require help in school and a quarter of those born before 25 weeks have severe long-term problems.
The finding was backed by Danish scientists who reported a 22 per cent rise in premature babies between 1995 and 2004. In the UK, specialists say a similar increase is likely to be under way, where there are about 45,000 premature births a year.
Older mothers and increasing obesity are among the factors thought to be driving the trend. The growth of IVF, with its high rate of twin births which have an increased risk of being born prematurely, is also a contributor.
Greatest concern surrounds the growing number of extremely premature babies, of 23 and 24 weeks gestation, who are at highest risk of suffering severe long-term impairment. At birth, every feature of their existence presents a challenge.
Visit any neonatal intensive care unit and you can see the struggle they face to survive. The doctors operate at the limits of medicine, and their newborn patients cling to the edge of life. The babies have lost the protection of the womb, and with warmth, oxygen and nutrients, the doctors try to substitute for its protective embrace.
Premature babies lack the subcutaneous fat that develops in the last month of pregnancy and gives full-term babies the fat, glossy look of the newborn. Their skin hangs loose in wrinkles and folds, as their lives hang by a thread.
Nurses drip expressed breast milk through tiny tubes and check monitors attached to scrawny chests. Alarms beep constantly, as traces record heart rate, breathing, oxygen level and blood pressure, while ventilator pipes gently vibrate. The consultant ward round is dominated by discussion of “creatinine levels”, “neuronal migration” and “immunoacids”.
That any of these babies survive at all is a miracle of modern medicine. That half of those born at 25 weeks grow up and go to primary school without any significant disability, as revealed by research, is a triumph.
But for the other half it is a different story. They and their parents face a heart-rending struggle in the face of disabilities that can include cerebral palsy, severe cognitive impairment, blindness and deafness.
Some specialists point out that while the attrition rate at these gestational ages – below 25 weeks – is very high, it is lower than it was and improving all the time. A decade ago, babies born at 28 weeks had similar outcomes to those now born at 24 weeks. That demonstrates medical advance and there is no reason why it should not continue.
Others say that though the successes are impressive, the price of failure, for the parent of a child who grows up profoundly disabled, is too great.
A spokeswoman for Bliss, the premature baby research charity, said yesterday: “Amillia’s is an amazing story and an astounding success. But she is in a minority. Successes like this rarely ever happen and there are many cases where things don’t work out so well. We hope Amillia will have a happy and healthy life. But we need to avoid giving the impression that this is the norm.”
Last November, the Nuffield Council of Bioethics ventured into the ethical minefield by publishing guidelines on when to provide intensive care to extremely premature babies, those born below 26 weeks. “Doctors have gained the capacity to prolong the life of newborn babies and the question is whether they should always do so,” said Professor Margot Brazier, who chaired the working party that produced the report.
The council’s recommendation was that babies born before 22 weeks, such as Amillia, should only be given intensive care as part of a research study. For those born between 25 and 23 weeks, it proposed a sliding scale with a diminishing expectation that intensive care should routinely be given as gestational age fell, unless the parents strongly objected.
The report was wrongly presented as proposing a blanket ban on saving extremely premature babies. Each case still had to be assessed on its merits, the authors said. One scenario presented was that of a 45-year-old woman who had no children, a last chance at pregnancy and who wanted to try to save her baby however slim the chance. One specialist, an author of the report, said that in that circumstance he would do whatever he could to help her.
Defending the need for guidelines, Professor Brazier said: “Natural instincts are to save all babies even if the baby’s chances of survival are low. However, we don’t think it is always right to put a baby through the stress and pain of invasive treatment if the baby is unlikely to get any better and death is inevitable.”
Amillia is one of the lucky ones. Yet even for her, the future remains uncertain. She will continue receiving oxygen at home and her breathing will be monitored. Her parents perhaps more anxiously than most, will watch to see whether she passes her developmental milestones of walking and learning to communicate. But at four months, and doing well, she is already a beacon of hope to parents of premature babies across the globe.
The Stanley family: ‘They were tiny, and very ill’
Expecting twins, Victoria Stanley was in just the 23rd week of her pregnancy when she went into labour. “There was no warning, it had been a normal pregnancy. We had had IVF but no one drummed it into us that there was a higher risk of prematurity with twins.”
It was 15 August 2005, and her husband, Martin, rushed her to Ashford Hospital, the closest maternity unit to their home in Canterbury where the babies were born in four hours.
Daisy weighed 1lb 7ozs and Archie 1lb 12ozs when they were born at 23 weeks 6 days gestation. “They were absolutely tiny. I wasn’t allowed to hold them because they were very ill. They were whisked away and put on ventilators,” she said.
Both needed intensive care but there were no intensive care cots at Ashford so Daisy was transferred to London and Archie to Cambridge, their mother and father commuting between them.
“I was in complete shock. I was warned while I was in labour that their chances of surviving were slim and the chances of their doing so without disabilities were incredibly slim. In the first hours and days all you think about is: will they survive? You keep your fingers crossed and hope somehow things will work themselves out.”
After two days the call they had been dreading came. They were in London with Daisy when the medical team in Cambridge rang to say Archie was dying.
“He had a massive bleed in his lungs and in his brain. There was no chance at all. At least we had a day with him before he died which was a blessing.”
Daisy was still severely ill. After blood transfusions and a heart operation her parents were told she had a two to five per cent chance of survival. She finally went home in January 2006.
“I think every single day how unlucky we were – and how incredibly lucky we are.”
Monday, Jan. 15, 2007
Tadd Fujikawa stood 50 feet away from the cup on the other side of the 11th green, staring at a birdie putt that not even the best players in the world expect to make.
Then again, the kid is used to defying the odds.
He was born 3 1/2 months premature and given only a 50 percent chance to live. In a sport ruled by high-priced swing gurus and golf academies, the only person resembling a coach is his mother. He looks out of place at the Sony Open not so much because of his age – he turned 16 on Monday – but the short, choppy strides from his 5-foot-1 frame.
The putt dropped into the heart of the cup and Fujikawa lunged forward and thrust his fist, sending some 1,500 people into another frenzy as they watched the pint-sized sophomore pull off another shocker Saturday in the Sony Open.
First, he became the youngest player in 50 years to make the cut on the PGA Tour with a birdie-par-eagle finish Friday for a 4-under 66. If that wasn’t enough, he got within three shots of the lead midway through the third round on his way to another 66.
He was four shots behind the leaders, who were not quite at the turn.
“Nothing in this game surprises me anymore,” said defending champion David Toms, who played in the group ahead of Fujikawa and waited until his shots were over to cope with crowd noise. “He’s having a good time.”
Fujikawa is a foot shorter and two years younger than Michelle Wie, the Hawaii teen who has been trying the last four years to get a tee time on the weekend at Waialae.
He made the hometown crowd forget about her on a sunny, breezy afternoon along the southeast shores of Oahu.
Fujikawa stayed up past midnight to watch highlights of him making the cut, then must have decided that wasn’t enough. Starting with a pitching wedge that stopped 4 feet from the flag at No. 5, he ran off five birdies in eight holes and was on the leaderboard.
His mother, Lori, stayed some 250 yards behind and couldn’t believe what she was watching.
But her only son has been full of surprises since he was born 3 1/2 months early, so small he fit into his grandfather’s palm.
“I don’t know why he came so early,” she said. “I was sleeping when all the contractions began, and there was no reason for me to go into labor. I guess he wanted to come out and see the world.”
He was in the hospital for three months, and doctors warned her it was 50-50 that he would survive. His first surgery was to reconnect his intestines, which caused more fears for his survival. They also told her a mental disability was possible.
“After his first year, we thought we were in the clear,” she said.
Fujikawa took up judo, then started whacking golf balls on the practice range at age 8. He got serious four years later when he took his first lesson from a PGA teaching pro, but lately he has been on his own, his mother at his side.
“He goes to school in the morning, then the golf course until dark,” she said. “Then homework and dinner. He loves it.”
It was hard to suppress a smile when Nick Faldo, the analyst for the Golf Channel, told him his game was good enough for the PGA Tour. That’s been the goal, and this week has been a delicious taste of it.
“Let’s hear it for Hawaii’s own … Tadd Fujikawa,” the announcer said behind the 18th green as the kid strolled up the fairway. He hit a wedge 10 feet below the cup for another roar, and the groan was almost as loud when he missed.
Despite his size, Fujikawa generates great club speed and hits his driver about 285 yards. And he showed plenty of savvy for only his second professional event (he qualified for the U.S. Open last summer at Winged Foot).
Behind two coconuts trees that split apart like a wishbone, he thought about hitting a fade between the trees.
“I took the other route and went around the trees,” he said, hitting a hard draw with a 9-iron that hopped out of the rough and landed on the fringe about 10 feet away for birdie.
He is not expecting to win, and even a 66 in the third round didn’t change his mind. He didn’t have any specific goals when he showed up Monday and played a pro-am round with Steve Stricker, and that hasn’t changed. “I’m just trying to have fun, and to do my very best on every shot,” he said.
The only regret Saturday was not seeing his name on the leaderboard along the back nine of Waialae.
“I saw the leaderboards,” he said. “I guess I was looking at the wrong time.”
Monday, Aug. 7, 2006
A WOMAN told she would never have kids after treatment for cancer has had TRIPLETS.
Rebecca Hillary, 23, feared the disease had returned when she got tummy pains — until doctors told her she was pregnant.
First she had daughter Kayleigh-Beth in March last year — and then, amazingly, fell pregnant again five months later and had triplets Hermione, Scott and Melody.
Rebecca said: “I still can’t believe it! It’s pretty hectic but I just love being a mum.”
She was just 19 when she was diagnosed with Hodgkin’s Disease.
After gruelling bouts of radiotherapy and chemotherapy she was finally told she was in remission.
But doctors said the treatment meant she would probably never conceive.
Rebecca recalls: “I had always wanted to have children, so I was pretty devastated.
“Then, when I was getting better and had just started work again in a hospital, I was having bad stomach pains and went to casualty.
“I was preparing myself for the worst, thinking the cancer had come back — but after tests they said I was pregnant.
“I told them I couldn’t possibly be and the doctor laughed. He said it was definite. I was in shock.”
Rebecca tells how she got an even bigger shock when she fell pregnant with the triplets. When she went for a scan, she was asked if she had conceived through IVF.
The wondermum revealed: “I said, ‘No, don’t tell me there’s two in there’. The nurse smiled and said, ‘No, not two — three!’ It’s a good job I was lying down.”
The triplets were born by Caesarean section nearly seven weeks early.
Thursday, Aug. 3, 2006
A ‘MIRACLE’ baby, whose parents feared he might not survive, will be coming home soon.
Tiny Jamie Farren had stopped growing in the womb and he could have died if his mother hadn’t had an emergency Caesarean.
And when he was born on 4 July he only weighed a little more than a bag of sugar.
But now he’s putting on weight and medics at Royal Alexandra in Paisley are so pleased with his progress that he’ll be home within weeks. His mum Catherine, 37, from Port Glasgow, said: “It’s a miracle — Jamie’s umbilical cord wasn’t working and he wasn’t getting the nutrition he needed to grow and he wouldn’t have survived if he hadn’t been delivered then.” The mum-of-three, who has a heart condition, was violently sick throughout her pregnancy.
And she was getting scans every two days to check on his progress at the Queen Mother’s in Glasgow.
When Jamie was born, Catherine and husband Eric had to wait a week before they could hold their son.
She said: “It’s heartbreaking looking at Jamie in an incubator.
“He’s still on oxygen and is being fed through a tube, but he’s a wee fighter.”
Proud grandparents Jim and Catherine, who live in Port Glasgow’s South Road, are thrilled.
Jim, 67, said: “It’s brilliant, especially as he’s named after me. We’re over the moon. He’s definitely a fighter — he’s like his old grandad. I had a lung operation because of asbestosis and I’m still going strong.”
The family, who now live in Johnstone, are planning a celebration with Jamie’s three-year-old twin sisters, Kiara and Jenna.
Wednesday, Jul. 26, 2006
Texas Children’s shows creative, less invasive approach can fix even the smallest aortas
Kaylin Baker’s heart, no larger than a quarter, was soon to fail.
Born two months premature, and weighing just 2 pounds, 8 ounces, Kaylin had two defects in her aorta, the body’s largest artery, which carries blood from the heart to the body.
Two narrowings, one in a valve leading from the heart to the aorta and the other farther down the line, were forcing the heart to work overtime to deliver blood throughout her tiny body. Without surgery, her doctors said, the heart soon would pump itself to death.
Then, said first-time parents Nancy and Chris Baker of Austin, a miracle happened.
Instead of cutting her chest open — a difficult procedure from which Kaylin might never recover — physicians at Houston’s Texas Children’s Hospital devised a daring, almost certainly never-before-tried procedure in a baby so small.
They would snake a tube, or catheter, through her neck and down an artery the size of a spaghetti noodle into her heart. From there, the doctors said, they could fix Kaylin’s heart and narrowed aorta with a tiny balloon and a small, cylindrical cage, or stent.
Their plan worked. After Wednesday’s four-hour procedure, Kaylin’s tiny heart showed promising signs of recovery Thursday.
“It has been an extremely difficult month for us,” Nancy Baker said. “We have gone from such extremes of emotion, and we had prepared to never see our child alive again. Then, to have the operation go so well, with no complications, we can’t even explain it in words. We are just in awe as to what transpired in there. There’s not even a cut on my baby, and they fixed her heart.”
Trend extends to children
The procedure highlights a dramatic transformation in the medical treatment of hearts. In recent decades, cardiologists, who do not perform “open” surgery but rather approach problems by using catheters and other minimally invasive tools, have come to treat a majority of blocked arteries and failing hearts.
That trend gradually has been extended to children, whose smaller arteries make it more difficult to navigate inside the body with a catheter. Now, as the doctors as Texas Children’s have shown, the technique can be used in the smallest of babies.
“There has certainly been a trend around the world and in our center, as well, to try and do more and more procedures in a less invasive way,” said Dr. Henri Justino, an interventional cardiologist who led Kaylin’s operation.
Less invasive procedures typically mean minimal scarring, and more importantly for Kaylin, a shorter recovery time.
About 1,000 cardiac catheterizations are performed at Texas Children’s in a year, but only two or three are done in such small infants, Justino said. The real novelty of Kaylin’s case was in combining two intricate procedures into a single operation.
Through a sesame-seed-sized prick in Kaylin’s neck, the doctors inserted a tiny balloon in the valve leading from her heart to the aorta. The valve mediates the flow of blood into the aorta, which descends from the heart through the chest and abdomen, delivering blood to most of the body. By blowing up the balloon inside the valve, doctors opened the critically narrowed valve to a healthy position.
After removing the balloon, the doctors sought to address the second narrowing, farther down her aorta. For this task they used an adult stent, about one-tenth of an inch wide. The metal cage, which expands to restore blood vessels to their normal size, normally is used to open the small arteries on the surface of the heart.
But for Kaylin, the stent’s small size was perfect to expand the narrowed aorta just below her chest.
Perhaps in a few months, or maybe not until she is a teenager, Kaylin will need further surgery, probably to implant an artificial valve. By that time, however, doctors think her heart and body will be strong enough to withstand the rigor.
“This child will definitely need open-heart surgery eventually. It’s just a matter of what’s the best timing,” said Dr. Charles Fraser Jr., chief of cardiovascular surgery at Texas Children’s, who consulted with the Bakers.
Murmur detected at birth
The surgery capped a hectic month for the couple. Born June 21, Kaylin unexpectedly came 28 weeks into Nancy Baker’s pregnancy — the couple and their doctor had no reason to expect a premature child. They had not even taken childbirth classes.
After a heart murmur was discovered during routine testing following Kaylin’s birth, the Austin doctors decided the baby probably should undergo a catheterization procedure. However, they planned to enter her arteries through the groin, the normal area for such procedures in adults. Because Kaylin’s arteries were so small there, doctors feared she might lose a leg.
Then, as the operation was being scheduled in Austin last week, Chris and Nancy Baker reconsidered their options.
“My wife and I didn’t feel like we had done our due diligence, on who out there in the world has done something like this on a baby this small. The answer was nobody.”
Eventually, the Bakers and their Austin doctors consulted with Justino, who had more experience with catheterization in small children, and everyone agreed to transfer Kaylin to Houston. On Saturday, an ambulance transported Kaylin and her mom to Austin-Bergstrom International Airport, and they flew on a small Texas Children’s plane to Houston.
Chris Baker described the surgery as a “true miracle and act of God.” And although Kaylin will have a struggle on her hands, her doctors are optimistic about her chances after she survived a harrowing first month of life.
“Of all the hurdles she is going to have to face in her life, this is probably the biggest one,” Justino said Thursday.
Kaylin’s birth already has altered the couple’s lifestyle. Chris Baker will remain a real estate agent, but Nancy Baker, a kindergarten teacher, has submitted her resignation.
“I’ll be staying home to take care of my baby,” she said.
Wednesday, May. 31, 2006
An infant who was born three months early in an unexpected place has been making tremendous strides by transforming total strangers into a family.
Nevaeh, heaven spelled backwards, was just 1 1/2 pounds when she was born to Salina Newman.
Newman thought she had miscarried into a toilet when she called 9-1-1, but rescue crews found her baby still in the amniotic sac and still alive.
“She’s had a pretty exciting life to only be so little,” Newman said.
Three months after her birth, Neveah was surprisingly strong enough to leave the hospital, but didn’t leave with her birth mother.
Newman decided the best thing she could do for her daughter was to give her up.
“It’s probably the best decision I’ve ever made,” Newman said. “The most adult decision I’ve ever made.”
Robin and Rob Layton became the proud adoptive parents of Samantha Neveah who is now a 4 1/2 pound preemie.
“We believe that God put her here, we met up for a reason and it was meant to be so we needed to take on the challenge and step up to the plate,” Robin said.
“We knew right away as soon as we saw her we fell in love with her,” Rob said.
The Laytons didn’t just bond with their new little girl but they also opened their hearts to her birth mother.
“Just to get to see her grow up and stuff,” Newman said.
Two mothers now have a tie that will keep them connected for a lifetime.
“This is what was supposed to happen so, no regrets,” Newman said.
“It’s amazing that she’s made it and she’s so strong and she’s so beautiful,” Rob said.
Her parents, all of them, consider her a blessing for what she’s brought to their lives and it’s just the beginning for the new extended family.
“I don’t know, it just seems like everything was meant to happen,” Newman said.
Samantha Nevaeh was visited constantly by the Littleton police and paramedics who saved her while she was in the hospital. They call her their honorary goddaughter and plan to follow her through her life.
She still has to take special vitamins, but Samantha Nevaeh had no health problems.
Monday, Apr. 24, 2006
It was a family reunion of sorts at Bailey Square Park in Central Austin.
Hundreds of families gathered for Seton Medical Center’s 31st neonatal reunion. It’s a chance for families of premature babies to say thanks to the doctors and nurses who many say are the reason their children are alive today.
Ava, Faith and Claire Price weighed less than two pounds each when they were born in March 2005.
“They were all very sick. They all had the typical preemie issues – heart issues, breathing issues,” mother Jackie Price said.
Those issues are no longer a problem after some time in Seton’s Neonatal Intensive Care Unit.
“They fall in love with the children too and provide such loving support for all the babies in the NICU, and they’re just extremely talented medical professionals,” Jackie said.
Thirty-one years ago, 23 children and their families met for the first neonatal reunion at Seton Medical Center. This year, more than 700 turned out.
“I recognize the parents’ faces and then I figure out who the children are and then they tell us how old they are and some of them are so beautiful. They all bring back special memories … Babies will continue to be born premature and sick and need our services, so it really does feel good to see them healthy and grown and happy and running around,” Dr. Susan Landers said.
The neonatal intensive care unit has grown from one doctor in 1972 to a staff of 12 doctors and 90 nurses. About 700 premature babies are admitted each year.
Wednesday, Apr. 19, 2006
A 5-percent chance of survival.
That’s what doctors told Katelyn Hall’s parents, Ashley and Michael, when she was delivered by emergency cesarean section Nov. 16, 2003, at 9:25 a.m.
Katelyn had been in Ashley Hall’s womb for only 25 weeks, making the baby nearly three months premature.
Weighing 15.5 ounces and measuring just over 11 inches long, Katelyn ranked as one of the smallest babies ever born at Georgetown University Hospital.
Now, the 2-year-old redhead with vibrant blue eyes bounces around her Leesburg home with no clue of how long the odds were against her at birth.
The only thing Katelyn knows is that she’s alive and, for the most part, healthy. She used to take 10 different medicines; now she is down to five or six.
Katelyn is not walking or talking yet, and at 20 pounds looks younger than her age, but her parents recognize that Katelyn’s journey is of undocumented proportions.
“We don’t compare her to anyone but herself,” Ashley said.
“We don’t treat her like she has any problems at all,” Michael said.
When Ashley Hall became pregnant, she didn’t know she suffers from a rare blood-clotting disorder that only appears when the body is under some type of stress, like pregnancy.
“We knew around the 16-week mark in the pregnancy that something was wrong because [Katelyn] was already measuring small,” she said. “We found out later that the blood flow between the placenta and her was insufficient because I had blood clots.”
The blood-clotting disorder caused preeclampsia, which developed into hemolysis, elevated liver enzyme levels and a low platelet count, also known as HELLP syndrome. Most women who develop the disorder don’t do so until the 32nd to 34th week of pregnancy, but Ashley Hall was rushed to an area hospital with cramps in week 25. On the night of Nov. 15, doctors decided she needed to be transported to Georgetown for emergency delivery to save her life.
Katelyn spent the first two months of her life on a ventilator and underwent heart surgery to close a valve when she was a week old.
She went through multiple blood and platelet transfusions throughout her first two months and suffered several infections.
Katelyn lived in the Neonatal Intensive Care Unit (NICU) at Georgetown for five months before she was well enough to go home with her parents to Leesburg.
“When she was in the NICU, it was always two steps forward, five steps back,” Ashley said. “It would go from, ‘oh, she’s doing great,’ to ‘you better get in here because we don’t know if she’s going to make it.’
“It’s hard to go home from the hospital after you’ve had a baby and not bring the baby home, especially thinking you may never bring her home.”
Katelyn underwent eye surgery and was hooked up to oxygen tubes until July 2005. She has chronic lung disease. She is missing her left cerebellum, which controls muscle coordination on the left side of her body, but every day uses her left hand more and more.
When doctors released Katelyn from the hospital, the Halls’ home became a makeshift hospital because the infant needed nursing care 16 hours a day until April 2005.
“The first two years, we didn’t take her out [of the house] except to go to the doctors, so she was here, in this house, pretty much for two years,” Michael said. “Someone had to be here 24 hours a day.”
Now, she visits occupational, physical and speech therapists four days a week, but otherwise leads a normal life.
Katelyn loves to go to the park and swimming pool. She enjoys swinging and being thrown into the air, but prefers being around people more than anything.
“If you put her in a room with a bunch of people and a bunch of toys, she’s more interested in the people,” Ashley said.
Katelyn is also very aware and smart. She can easily follow simple instructions from her parents.
“I think she understands more than she can communicate back,” Ashley said.
Challenges for Katelyn’s parents
Michael and Ashley Hall have found one of the toughest parts of being parents to a premature baby is balancing their work schedules with caring for Katelyn.
Michael is employed by the county’s Sheriff’s Office, while Ashley co-owns a consulting business.
They are lucky to have good insurance, which has covered many of the more than $1 million in expenses. They call Katelyn their “million dollar miracle.”
Another obstacle for them was a lack of knowledge about the different support groups available for parents of premature babies.
“There’s more support for the women than there is for the men,” Michael said. “There was nothing. I didn’t have any friends out here who could relate to anything we were going through.”
He has made himself available to other fathers experiencing this situation. The Halls encourage parents of premature babies to find support groups as early as possible and to ask the doctors a lot of questions.
“There were times we would see something with Katelyn that we thought was wrong, but we wouldn’t say anything,” Michael said. “Then, two or three days later, it would come out that she was sick or something was wrong.
“You have to be your baby’s best advocate.”