November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our tenth profile is of a little beauty named Margaret “Maggie” Grace.

Maggie was born on August 25th 2005 at 25 weeks 2 days. Mom Dana had extremely low amniotic fluid. Maggie was also an IUGR (IntraUterine Growth Retardation) baby. Dana had developed severe pre-eclampsia (a condition characterized by pregnancy-induced high blood pressure, protein in the urine, and swelling (edema) due to fluid retention), which turned to HELLP syndrome (a complication of severe preeclampsia).

Maggie at birth weighed only 15 ounces which is about 425 grams. She was in three NICU’s. The first one she was in for two days, the second one for a week and then the last one for four and a half months. Maggie was born right before Hurricane Katrina and was evacuated from New Orleans to Baton Rouge. Mom and dad did not see her for a week as they were in one hospital and she was in another.

Overall it was a rough four and a half months. Maggie was on and off of the vent and had many infections through her stay and almost didn’t make it several times. There were many nights spent sleeping in the NICU waiting room praying that no one would come tell mom and dad any bad news.

While there we met many people in the same situation. One was a family who lost their preemie four months after she was born. That was hard as Maggie was in the isolette right next to her and when Maggie had ups this little one had downs and vice versa.

Maggie had a fundoplication (a surgical operation for gastro-oesophageal reflux disease in which the upper part of the stomach is wrapped around the lower esophagus) done along with a gastrostomy (A method to facilitate feeding in which a tube is surgically placed directly into the stomach, through the abdominal wall) while in the NICU. Maggie did nipple feed for a while but it was not going great and she suffered from aspiration (milk entering into the lungs) and the doctors felt this was the best option for her at the time. We had some of the best doctors and nurses we could ask for while in the NICU, who made the whole ordeal easier for us.

Mom and dad had clothes and blankets for Maggie made by volunteers and she always had decorations in her corner and on her isolette for every occasion. Mom and dad wanted to make it as close to home as they could. They found out after a month that by playing music-Disney Princess instrumentals in fact-from a CD player, it would calm her down and help her oxygen saturations.

All in all Maggie’s stay was a roller coaster. Ride up and down with the twists and turns. Thankfully this little fighter made it home safe and sound! The technology they have today is amazing and just miraculous in moms opinion!

As for lasting effects from her prematurity, Maggie is little but that is basically all. She had her feeding tube removed in May of 2009 and now eats by mouth. She has great vision and hearing and no other delays except for needing some speech therapy in school as she can not say some letters that well. Mom feels very blessed.

If Dana had one piece of advice for a new preemie mom, it would be this: Have Faith. Do what feels right to you and know that these babies are some of the strongest fighters ever!

I asked Dana to describe Maggie in one word and she said “AMAZING.”

What an ordeal with the NICUs! She sure is an amazing child!

November is Prematurity Awareness Month. In honor of this, some parents who have had babies prematurely have offered to tell their stories to create awareness about his important cause.

Our nineth profile is of Bryce and Chloe.

Bryce and Chloe were born on May 26th 2009 at exactly 24 weeks. Dad Jason said “yes and no” to whether or not the reason was known for the premature birth of the babies. Jason said that he went in with his wife to the OB for a regular check up at 22 weeks. Her doctor discovered that she was 2 cm dilated and 100% effaced with bulging membranes (amniotic sac). This was less than two weeks after a completely normal ultrasound appointment. Christie was taken by ambulance to the University of Minnesota Medical Center, where the maternal-fetal medicine specialists told us that she was in serious danger of preterm premature rupture of membranes (PPROM), and that the twins could be born at any time. She was put on hospital bed rest and constant monitoring from that moment on. Three days later, her membranes did rupture, but the twins held out for another 11 days before they developed complications and had to be delivered by emergency c-section.

Jason says that they still have no idea why Christie’s body effectively decided it was “time” nearly 18 weeks early. There were no signs of infection, and she didn’t have any complications or warning symptoms. Her OB-GYN speculated that since she has a rather small uterus, the size of the growing twins felt like a full-term baby to her body far too early.

At birth, Bryce weighed in at 580 grams and his sister Chloe was 555 grams. Until they were born, everyone thought that Bryce (Baby A’s) amniotic sac was ruptured, and that he was holding on for his little sister. As it turns out, it was Chloe’s sac that had ruptured, which may in part account for her slightly smaller size and subsequent complications. Both of the twins were stable after intubation in the delivery room, with Apgar scores of 4/8/9 for Bryce and 3/5/7 for Chloe.

In all but one respect, Bryce was always the stronger of the two. The day after he was born, they took him off the ventilator and he was breathing room air unassisted for close to four hours! Both twins started off on mechanical ventilators, and were then moved to high-frequency jet ventilators. They both had PDAs (patent ductus arteriosus), but Bryce’s closed with medication, while Chloe required surgery. Both twins had Grade 2 IVHs (brain bleeds), but Chloe’s was bilateral, while Bryce’s was only on one side and resolved very quickly. Bryce opened his eyes first, and was also the first to start receiving gavage feedings of Mama’s milk. When they found bacteria growing in their ventilator tubes and subsequently in their urine, Chloe’s was always more severe.

Bryce’s big challenge was low blood pressure. He was on dopamine for hypotension until he was nearly a month old; Chloe only needed the medication until she was about two weeks old.

In fact, our little princess looked like she was going to leap frog ahead of her big brother at three weeks of age, as she started gaining weight more steadily and her feedings increased faster.

Unfortunately, our daughter developed necrotizing enterocolitis (NEC) at around 3.5 weeks; tragically, a suspected bowel perforation less than a day later resulted in a massive infection and heart failure that claimed her life very abruptly on day 26, despite heroic efforts on the part of the NICU staff.

Bryce was on the ventilator for a little more than five weeks, and then on a nasal cannula for an additional nine weeks. He developed stage three aggressive posterior retinopathy of prematurity (AP-ROP), and was transferred to Children’s Hospital of Minnesota for laser surgery at 70 days of age. He recovered from the surgery well, and stayed in the hospital for another 38 days before he came home. Bryce also struggled with reflux and apnea/bradycardia spells when he started bottle/breast-feeding, and he suffers from protein-induced enterocolitis, which means that Mama is on a dairy-free/soy-free diet to this day. Bryce came home on an apnea monitor (which he is still on), but did not need oxygen or caffeine.

Bryce spent 108 days in the NICU before coming home. As for lasting effects, dad says it is a little early to say whether the issues will be mild or moderate. His growth started off slow, and he’s extremely small even for his adjusted age, but he’s been exceeding expectations for the past month. Bryce is likely hard of hearing, but he is not deaf, and part of his hearing trouble may be due to a small cleft palate which will eventually be repaired. Bryce had laser surgery for AP-ROP, and he will definitely need glasses someday, but he is not blind and we’re cautiously optimistic that he will have decent vision as he gets older. It’s too early to tell if he’ll have developmental issues, but odds are that he’ll have at least a few challenges to overcome.

Dad says that one of the hardest parts about having Bryce at home is how isolated they feel. Due to his small size and Chronic Lung Disease, which is damage to the lungs caused by the six weeks he spent on ventilators, we are constantly reminded that if Bryce gets sick, he’ll likely end up back in the hospital. This has been especially hard with all the fear surrounding this year’s cold & flu season, as dad feels like they have to keep him quarantined at home. Though he is nearly six months old, many of Bryce’s family have yet to meet him!

Bryce has his angel sister Chloe to look over him. He also has a big brother named Logan who is almost three years old. Logan was born at full term. Dad says he is a great kid and loves to help out his little brother.

If Jason had one piece of advice for a new preemie parent, it would be this: Be there for your child(ren) as much as you can. Yes, it’s scary and it’s stressful, but try to learn as much as you can about their care. The doctors and nurses at both our NICUs were fantastic, but even good people make mistakes, and you’ll notice little things about your child that the nurses might miss. Speak up if you have concerns, don’t be afraid to ask questions, and don’t back down until you’re satisfied.

I asked Jason to describe Bryce and Chloe in one word and he said this: Bryce “TENACIOUS” and Chloe “DRAMATIC”.

I have to say that I am absolutely BEYOND impressed with Jason. It is not too often that you see a dad in an online group for premature babies. This is definitely a hands on dad and it is so refreshing to see!It seems to me that Bryce and Chloe came into a wonderful family full of love and hope. I wish Bryce nothing but the best, along with his mom, dad and brother in the future.

If you would like to read more about the twins or follow the journey that lies ahead, you can go here to A TWIN STORY

November is Prematurity Awareness Month at the March of Dimes. Launched on January 30, 2003, the Campaign has two goals: (1) to raise public awareness of the problems of prematurity and (2) to decrease the rate of preterm birth in the U.S.

The campaign:

• Funds research to find the causes of premature birth
• Encourages investment of public and private research dollars to identify causes and to identify and test promising interventions
• Educates women about risk-reduction strategies and the signs and symptoms of premature labor
• Provides information and emotional support to families affected by prematurity
• Advocates to expand access to health care coverage to improve maternity care and infant health outcomes
• Helps health care providers to improve risk detection and address risk factors
• Generates concern and action around the problem

Four years ago, I welcomed a tiny baby at 24 weeks gestation weighing just 675gms. At his lowest weight he was 490 grams, which is just an ounce over a pound. We were very lucky that our son was able to come home just 3 days after his official due date. Many parents we met stayed at the hospital much longer than we did. Before he arrived, I had no idea that a baby so small could survive outside of the womb.

In 2006, nearly 543,000 infants were born prematurely. Prematurity is the leading killer of America’s newborns. Those who survive often have lifelong health problems, including cerebral palsy, mental retardation, chronic lung disease, blindness and hearing loss.

For over 65 years, the March of Dimes has saved millions of babies and children from death and disabilities through their life-saving research, innovative programs, and dedicated volunteers.

We are honored to have many families who have offered to share their stories. These babies, born between 23 and 32 weeks gestation) all arrived under unique circumstances.

Over the next few weeks we will be profiling these special babies who beat the odds of prematurity and are still fighting to develop each day!!

Please do what you can to support an organization that is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

Research conducted at Queen Mary, University of London, has found that the number of Down’s Syndrome pregnancies rose as women are deciding to have children later in life. The same study also revealed that despite the increased diagnoses, the number of babies born with the chromosomal disorder has remained almost unchanged because of improved screening and subsequent abortions.

Delaying motherhood is the reason for a 71% increase in the number of babies diagnosed with Down’s syndrome in the last two decades.

Stats show that in 1989/90 there were 1,075 with down syndrome and now for 2007/08 that went up to 1,843.

A woman in her 30s has a 1 in 940 chance of having a baby that is diagnosed with down syndrome. At the age of 40 this rises to 1 in 85.

Live births of Down’s babies fell from 752 to 743 –or 1.10 to 1.08 per 1,000 births – over the period of time covered by the research.

If screening had not happened, the number of babies born with Down’s would have risen by 48%.

Around 92% of women who were screened and got a Down’s syndrome diagnosis decided to terminate their pregnancy. This is a HUGE number.

Terminations of Down’s syndrome pregnancies due to an increase and improvements in antenatal screening have caused the number of live births with Down’s syndrome to remain constant.” The study used data from the Down’s register for England and Wales, published online by the British Medical Journal.”

Any thoughts on this? I know that I feel that these babies have just as much of a right to be born and live a life as any other baby. It is sad that so many parents are choosing to abort a child that would teach them so much about life that probably isn’t possible with another child. – Shannon, Staff Writer

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Nicolas Cage, his wife Alice Kim and son Kal-el paid a visit to a hospital in Bath trying to raise money to open up a new neo-natal intensive care unit.

There was quite a crowd at Royal United Hospital waiting for pictures and photographs with the actor. He urged everyone to “buy a brick” in order to raise the funds needed for the NICU.

Cage, Alice and his son met some of the nurses, parents and some of the babies.

“I love all children, I love babies,” he told BBC News.”

Heartbeat actor Jason Durr joined Cage. His twins were born at Royal United Hospital.

“If you ever wanted to find a place where there are little angels on earth then it’s here and they come and care for your children,” he said.

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New Research suggests that giving babies Tylenol to prevent fever when they get childhood vaccinations could make the shots a little less effective.

It is the first major study to tie reduced immunity to the use of fever-lowering medicines. Although the effect was small and the vast majority of kids still got enough protection from vaccines, the results make “a compelling case” against routinely giving Tylenol right after vaccination, say doctors from the U.S. Centers for Disease Control and Prevention.

It’s common for parents to give their kids Tylenol just before or immediately after a vaccine is administered to prevent fevers and crankiness.

However, fever after a vaccine isn’t necessarily bad — it’s a natural part of the body’s response. Curbing fever, especially the first time a baby gets a vaccine, also seems to curb the immune response and the amount of protective antibodies that are made, the new study found.

The study, which was led by military and government scientists in the Czech Republic at 10 medical centers in that Eastern European country. It involved 459 healthy infants, 9 to 16 weeks old, who were getting vaccines against polio, pneumonia, meningitis, whooping cough, tetanus, hepatitis and other childhood diseases.

Half were given three doses of Calpol, or paracetamol — a Tylenol-like brand sold in Europe — during the first day after vaccination. The others were given nothing besides the vaccines.

Babies given the painkiller were significantly less likely to develop a fever — 42 percent versus 66 percent of the others — and very few in either group developed a high one.

However, lower rates of protective antibody levels from several vaccines were seen in the group given the drug. Levels remained significantly lower in this group after booster vaccines, given when the babies were 12 to 15 months old.

Next, the researchers looked at 10 other vaccine studies and found some supporting evidence that using Tylenol to prevent fevers at the time of vaccination may curb immune system response rates. The same may not be true of using the drug to treat fevers after they develop.

The CDC doctors also point out that even with the fever-lowering drugs, more than 90 percent of children in the Czech study achieved protection from the various vaccines after the booster dose, so the effect of lower levels of antibodies on any individual might be small.

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Bernie and Kelli Lange of Colorado are the parents of a beautiful and healthy baby baby boy named Alex. They were recently shocked to find out that their son was denied health insurance by Rocky Mountain Health Plan because the company considered him to be “too fat”. Apparently, he fell into their high risk category because of his above average weight.

Baby Alex falls into the 99th percentile with his height and weight for his age group. He is four months old and weighs 17lbs and is 25 inches long.

Rocky Mountain insurance underwriters said that it was industry standard to deny coverage to new patients above the 95th percentile. They said the rule includes babies but this was the first time they had ever actually rejected one.

After a bit of media attention, brought on by the fact that Alex’s dad is a part-time news anchor, Rocky Mountain announced they had changed their minds and agreed to give him coverage.

The crazy part of all of this, is that baby Alex is exclusively breastfed, which is the healthiest and most nutritious way to feed a baby.
Dad Bernie said:

I could understand if we could control what he’s eating, but he’s 4 months old. He’s breastfeeding. We can’t put him on the Atkins diet or on a treadmill. There is just something absurd about denying an infant [coverage].”

The couple had been seeking new insurance because the plan they had went up by 40 percent after Alex’s arrival. The medical director for Rocky Mountain insurance, Doctor Doug Speedie, later admitted the system is flawed.

“It’s possible for a baby to be above the 95 percentile and still be healthy”

To be denied health coverage because your baby is in the 99th percentile is very absurd to me. Add to this that the baby is ONLY breastfed and it makes this whole story even more crazy.

I am glad that all this media attention helped them to get the coverage that they deserve for Alex. – Shannon Strohm, Staff Writer

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There is a new study that is out which was done by researchers at the University of North Carolina and British Columbia’s Simon Fraser University. It is the first time that they are looking at links between prenatal BPA (bisphenol A exposure) exposure and behavioural issues in kids.

“Daughters of women who were exposed to a common chemical found in plastics while they were pregnant are more likely to show aggressive and hyperactive behaviours as two-year-olds, a new study shows.”

The study did show that the girls who had mothers that were exposed to the BPA while pregnant did have more “externalized” behaviour than the average two year old.

The chemical concentrations between 13 and 16 weeks of pregnancy were most strongly associated with behaviour problems in girls, but the study found no significant effect on boys.

Externalized behaviour includes more aggression and hyperactivity.

The women were followed during their pregnancy and until the children turned two years old. They measured the concentration in their urine at week 16, 26 and birth. The BPA was found in 90 percent of the urine samples taken. At the age of five the girls will be tested again.

BPA, a hormone disrupter that can cause reproductive damage and lead to prostate and breast cancer in adulthood, is a building block in polycarbonate plastic. People are exposed to BPA through medical tubing, some hard plastic water bottles, some baby feeding bottles, dental fillings, food-can and packaging linings, and carbonless paper.

In October of 2008 Canada was the first to declare BPA hazardous to the health and welfare of humans. They also made sure that the baby industry was not allowed to use the BPA in baby bottles.

While there was a measurable increase in aggressive behaviour among girls, the study also showed some evidence of increased depression and anxiousness among BPA-exposed boys — a finding Lanphear said needs further study.

My advice would be to stay away from anything containing BPA before even getting pregnant so then you know that you are not placing yourself at risk.

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• Sick and Pregnant, But Not Always In The Morning
  
• The 21 Week Controversy

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I recently had the opportunity to meet with MD Moms at the ABC Kids Show in Las Vegas.

MD Moms are two board-certified pediatricians who are also moms. They were inspired by the needs of their patients and their own children to create Baby Silk, the first pediatrician-developed personal care line for babies!

One of my girlfriends can’t say enough about the SPF 30 sunscreen towelettes and their cleansing towelettes; and because I have heard nothing but wonderful things about both of those products I couldn’t wait to meet with them at the show.

Upon learning that I was expecting my first baby, the MD moms recommended their Spaaah Baby Gift($64) set to sample with strict orders that I should be using it during my pregnancy and not wait until the baby arrives.

The Spaaah Baby Gift set includes full sizes of the Gentle All-Over Clean Hair and Body Wash, Daily Skin Protection Moisturizing Balm and Delicate Skin Comfort Silky Liquid Powder. At first I was a little unsure about their request for me to use the products now – after all aren’t they meant for babies?!?

All three of the products have the wonderful signature smell that all the Baby Silk products are known for. Because of this I love using the body wash every time I shower. The moisturizing balm has also come in especially handy in the past few weeks. With the cold weather upon us, and my excessive hand washing, I’ve found that it is perfect for taking away that dry feeling without being greasy.

Surprisingly, the best part of the gift pack has proven to be the product I thought I’d use the least. Since becoming pregnant, I’ve found that little parts of my body that had never sweat in the past were now surprising me with little beads of dampness (including under my breasts, the bottoms of my feet and most recently between my thighs). A couple weeks ago my husband walked in on me after I got out of the shower to find me applying deodorant under my breasts. With a look of total shock on his face, he announced “I really wish I hadn’t seen that” as he quickly left the bathroom.

Lucky for me the Delicate Skin Comfort Silky Liquid Powder has been the perfect cure for this! It smooths on like a lotion then transforms into a silky, protective stay-dry powder to keep any fold or crevice comfortably dry and cool – with an added bonus – it doesn’t freak my husband out!!

All Baby Silk products are made especially for babies and their delicate skin. They are made with pure, high-quality ingredients and do not include additives that have proven to be skin irritants. Whether for infant for mom we would highly recommend any of MD Moms products! – Tanya, Staff Writer

A five-day old baby is being described as a miracle after he survived being born with heart outside of this chest.

Vibha Devi, who was born on Thursday in a remote rural village in India’s Bihar state, was rushed by 24hr train to the capital by his desperate father.

Leaving his wife behind, Chander Manjhi and his father-in-law travelled to Delhi’s All India Institute of Medical Sciences (AIIMS) to try to save the child’s life.

During a complete check-up doctors found the baby also has multiple disorders. Apart from the protruding heart, he also has a hole in his heart and has a single pump (for pumping blood). A normal heart has two pumps.

Suffering from a condition known as Ectopia Cordis, which causes the heart to be abnormally placed inside or outside of the body, most babies die within hours of being born.

However, there is guarded optimism for Vibha after the child survived the arduous 800-mile train journey from Muzaffarpur to Delhi.

“He is stable and is being treated for infection. Once the infection goes, we will do the surgery,” said Dr A.K. Bisoi, a cardiologist at the Cardiothoracic and Vascular Surgery Department at AIIMS.

“His parents are lucky the baby is still alive even after infection as it has spread to all body parts. We are trying our best to save the baby.”

Due to the family’s income and the rarity of the child’s condition, cardiologists at AIIMS, including Dr Bisoi, are providing treatment for free.

A team of five surgeons is on stand-by to operate should Vibha survive the next few weeks.

“The surgery is a multi-layered procedure and might take months,” said Dr Bisoi.

“We have to create space step by step and the chest wall has to be reconstructed.

“In India, no infant with such a defect has survived,” Dr Bisoi added.

‘There are only three survivors suffering from the disease in the world. But this baby is the only one with two heart defects,’ he said.

‘It’s a miracle and challenge for doctors. Every extra day he survives gives us an opportunity to deal with the rare disease and we are learning a lot from the case. We are doing our best to ensure the child lives,’ Bisoi said.

For now, the baby’s heart has been covered with a synthetic membrane and infected blood fully replaced from his body.

In 2006, doctors in Florida, U.S. carried out a similar operation on Naseem Hasni who was born with his heart outside his chest.

Doctors wrapped his heart in Gore-Tex, a waterproof, breathable fabric used in outdoor clothing and medical applications. His heart was then wrapped in a layer of his own skin, to substitute for his missing pericardium, the sac that encloses the heart.

The heart was then slowly eased inside his chest.

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• Baby Born With Heart, Liver Outside of Body

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