Archive for the ‘Baby’ Category

Parent navigators – a lifeline for NICU moms and dads

Tuesday, January 17th, 2017

Preemie on oxygen.jpg resizedIf you’re the parent of a baby born prematurely, you know the stress and anxiety that is a part of having your baby in the Neonatal Intensive Care unit (NICU).  Even if the entire NICU staff is super supportive and answers your every question, you may still feel like you’re on an ocean in a life raft without oars or directions. The feeling can be overwhelmingly scary.

Then, once your baby is discharged from the NICU, you may begin a whole new journey of medical visits, specialists, therapies, and figuring out the complex world of health insurance. If your baby has special healthcare needs, these next steps may be confusing at best.

Enter Parent Navigation Programs. These are programs designed to assist parents of children with special healthcare needs. The hook is that parents are assisting parents. The parent navigators have been in their shoes, as they have children with special healthcare needs.

One of our NICU Family Support Partner hospitals, Children’s National Health System in Washington D.C., employs parent navigators to provide support to parents of children with complex medical conditions. They help the parents of newly diagnosed babies or young children navigate the complicated healthcare system to get the care their child needs and to access vital community resources. And, perhaps the best part is that these parent navigators provide the emotional support that only another parent of a special needs child can fully understand.

Children’s National started their Parent Navigator Program in 2008, and is now launching a new program aimed specifically towards parents of newborns in the NICU. These babies may be born prematurely (before 37 weeks of pregnancy), with complex medical conditions and/or with birth defects.

“This short-term, peer-to-peer “buddy” program looks to decrease stress, anxiety and depression in mothers of NICU babies during hospitalization” says Michelle Jiggetts, MD, MS, MBA, Program Administrator of the Complex Care Program and the Parent Navigator Program at Children’s National.

The success of this new program will be measured scientifically, by looking at the differences between parents who leave the NICU with a parent navigator, and those who do not. They will measure caregiver stress, anxiety and depression, as well as the amount of healthcare services a baby uses after leaving the NICU. The hope is that the group that had the benefit of a parent navigator for a year following their baby’s hospital discharge, will fare better overall – both parents and baby. You can learn more about this unique program, here.

According to Dr. Jiggetts, the parent navigator’s role is to:

  1. Provide peer-to-peer mentoring and support
  2. Link families to community resources and support groups
  3. Coach parents to be active partners and communicate effectively with health care providers
  4. Suggest useful tools (e.g. care notebooks) to help organize medical information
  5. Help families navigate the healthcare system and insurance issues
  6. Encourage families to focus on self-care

It seems like a no-brainer that a program like this will be incredibly helpful. As we all know, babies don’t come with instruction manuals, and infants with special healthcare needs have their own intense challenges. Having a peer “buddy” available to provide the low-down each step of the way must be a life-line that any parent would appreciate, but especially a parent of a preemie or baby with a health condition.

Even though you’re in a life raft on that ocean, you’ve now been given oars and a compass, and land is in sight.

 

Update! New guidelines on how to prevent peanut allergies in your baby

Monday, January 9th, 2017

peanut butterPeanut allergies have become a hot topic and for good reason. These allergies can be severe and lifelong.

I remember when I was in school, before my math class we would have to dispose of all peanut products before stepping into the room because a student had a peanut allergy. Even when all products were thrown in the garbage, if the food got in the air, it caused her to have a reaction and she needed to leave class immediately. For those people with a peanut allergy, it can seriously affect their everyday lives.

But good news has just arrived. New clinical guidelines have been issued to help prevent the development of a peanut allergy in children.

Why was there a change in the recommendations?

A new study involving more than 600 babies ages 4-11 months found that those infants who avoided peanut products had a higher rate of peanut allergy than those who ate peanut-products.

Babies and children (up to age 5)  who regularly ate peanut products were less likely to develop a peanut allergy. Specifically, high risk infants (babies who had severe eczema or inflammation of the skin and/or an egg allergy) had an 81% reduction in the development of a peanut allergy.

What are the new guidelines?

  1. Infants who are at high risk of developing a peanut allergy and already have severe eczema, egg allergy or both, should have peanut-containing foods introduced into their diet as early as 4-6 months of age to reduce the risk of developing the allergy. But be sure to speak with your baby’s provider before beginning this process.
  2. Infants with mild to moderate eczema should have peanut-containing foods introduced into their diets around 6 months of age to reduce the risk of peanut allergy.
  3. Infants without eczema or any food allergy can have peanut-containing foods introduced into their diets at any time after solids have successfully been introduced.

Important:  In all cases, your baby should start other solid foods before introducing peanut-containing foods. Never give whole peanuts or peanut pieces to children under the age of four. Be sure to speak with your baby’s health care provider before making any changes to your baby’s diet. For more information about peanut allergies, see this article from the American Academy of Pediatrics.

Have questions about these new guidelines? Text or email us at AskUs@marchofdimes.org.

Can the benefits of kangaroo mother care last into adulthood?

Tuesday, December 13th, 2016

kangaroo-care-21Parents who have had a baby in the NICU are familiar with kangaroo care or skin-to-skin care. Kangaroo care is a way to hold your baby so that there is as much skin contact between you and your baby as possible. It has wonderful benefits for parents and preemies. A new study shows that the benefits of an intensive form of kangaroo care, kangaroo mother care (KMC), may last into adulthood.

Kangaroo mother care was initially developed in Bogota, Columbia in the late 1970s. It was initiated in response to a shortage of incubators and a high rate of severe hospital infections. KMC involves continuous skin-to-skin contact, exclusive breastfeeding (or nearly exclusive), and timely (early) discharge with close follow-up. At the time, this was a revolutionary idea and very different than the typical practice of limited parental access to premature and low-birthweight infants. From 1993-1996 a study was conducted to scientifically prove the benefits of kangaroo mother care. It found that the survival, growth, development, and other selected health-related outcomes were equal to or better than those of infants cared for in a traditional manner.

The same researchers have now done a follow-up study of these children to see if the benefits of KMC have lasted into adulthood. They again compared the groups who had kangaroo mother care vs. traditional care. The researchers found that the KMC group had “significant, long-lasting social and behavioral protective effects 20 years after the intervention.” They were less aggressive, less impulsive, and less hyperactive than the group that did not receive KMC.

More studies are needed to help better understand how KMC influences long-term outcomes. But we know that kangaroo care has immediate benefits for both parents and babies while they are in the NICU. Kangaroo care may help your baby:

  • Keep his body warm
  • Keep his heart rate and breathing regular
  • Gain weight
  • Spend more time in deep sleep
  • Spend more time being quiet when awake and less time crying
  • Have a better chance of being able to breastfeed

And, kangaroo care may help you:

  • Make more breast milk
  • Reduce your stress
  • Feel close to your baby

Kangaroo care can be beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby.

Have questions? Text or email us at AskUs@marchofdimes.org.

See how your state is doing on childhood vaccination rates

Wednesday, December 7th, 2016

baby vaccinationYou know that vaccines are very important. They protect your baby from serious childhood illnesses. Over the years vaccines have prevented countless cases of disease and saved millions of lives.

However, immunization rates across the United States vary. In order to show how vaccination rates differ among individual states, the American Academy of Pediatrics (AAP) has developed an interactive digital map that shows state immunization rates for vaccine-preventable diseases, including:

  • Flu: The best way to protect your baby from the flu is to make sure he gets a flu shot each year before flu season (October through May). Even though your baby’s more likely to get the flu during flu season, he can get it any time of year. The flu shot contains a vaccine that helps prevent your baby from getting the flu. Children older than 6 months can get the flu shot. Your baby gets two flu shots in his first year life. He then gets one shot each year after.
  • Varicella: This vaccine protects your child from chickenpox, an infection that spreads easily and causes itchy skin, rash and fever.
  • Diptheria, Tetanus, and Pertussis (DTaP): Diptheria causes a thick covering in the back of the throat and can lead to breathing problems, paralysis, heart failure, and even death. Tetanus (lockjaw) is a serious disease that causes painful tightening of the muscles, usually all over the body. And pertussis (also called whooping cough) is a highly contagious respiratory tract infection that is dangerous for a baby.
  • Measles, mumps and rubella (MMR): This vaccine protects your baby against measles, mumps and rubella (also called German measles). Measles is a disease that’s easily spread and may cause rash, cough and fever. Mumps may cause fever, headache and swollen glands. Rubella causes mild flu-like symptoms and a skin rash.
  • HPV (human papillomavirus): This vaccine protects against the infection that causes genital warts. The infection also may lead to cervical cancer. The CDC recommends that women up to age 26 get the HPV vaccine.

According to the AAP, “The map also highlights recent outbreaks of disease that have occurred in communities where pockets of low-immunization rates left the population vulnerable. While immunization rates have remained steady or increased for many vaccines over the past decade, recent studies show that unvaccinated children are often geographically clustered in communities. These pockets of under-immunization are at higher risk of disease and have been the source of disease outbreaks, as seen with the 2014 measles outbreak in California.”

Vaccines don’t just protect the person who receives them, but they also protect more vulnerable populations, such as infants and children who cannot be vaccinated for medical reasons.

Check out the map to find out what the childhood vaccination rate is in your state and how it compares to others. And remember to make sure that you and your children are up to date on all your vaccinations!

Have questions? Text or email us at AskUs@marchofdimes.org.

Looking for a reason to get a flu shot? Here are 10 good ones.

Monday, December 5th, 2016

DoctorPregnant_zps3ac96800Many myths abound about whether a flu shot is important. Here are 10 facts that should convince you that a flu shot is good for you and your family:

  1. Flu can be life threatening. Children younger than 5, and especially kids younger than 2 are at a higher risk of complications from flu.
  2. Children of any age with long term health conditions, including developmental disabilities, are at a higher risk of serious problems from flu.
  3. Children with neurologic conditions, and kids who have trouble with lung function, difficulty coughing, swallowing or clearing their airways can have serious complications from flu.
  4. Pregnant women can have consequences from flu that include miscarriage, preterm labor, premature birth or giving birth to a baby with a low birthweight. It’s safe to get a flu shot any time during pregnancy.
  5. Babies can’t get their own flu shot until they are at least 6 months of age. This is another reason why women should get a flu shot during pregnancy. The protection will pass to the baby when she is born.
  6. Since babies are at risk until they’re vaccinated, protect them by making sure the people around them are vaccinated – all caretakers, family members and relatives.
  7. Adults older than age 65 (grandparents!) can suffer serious consequences from the flu.
  8. You don’t get the flu from the flu shot. It is made up of inactivated (dead) flu virus. You may experience soreness at the injection site, have a headache, aches or a fever but these symptoms should go away within a day or two. The flu lasts much longer and is more severe.
  9. Aside from barricading yourself in a room all winter long (?!) the best way to protect yourself from flu is to get vaccinated.
  10. This year, the flu vaccines have been updated to better match circulating viruses. There are also different options available, including one for people with egg allergies. Your healthcare provider can advise you.

So, what are you waiting for? Go get protected!

Here’s more info about people at high risk of developing flu-related complications and answers to frequently asked questions can be found here.

Vote for us in Healthline’s Best Health Blog Contest

Friday, November 25th, 2016

We’re thrilled! News Moms Need has been nominated in Healthline’s “Best Health Blog Contest.” Now, we need your votes to win.

Won’t you take a moment each day, from now until December 12th, to cast your vote for us? It’s simple:

2016 Healthline winner widgetWe were grateful when we were selected as a winner in Healthline’s Best Pregnancy Blogs earlier this year.  Now, Healthline’s Best Health Blog award would be an even greater honor, especially as we cover topics from preconception to childbirth, to babies with special needs and staying safe from Zika.

Our goal is to keep you and your family healthy  – all News Moms Need!

We’d love to receive this award. But most of all, we’d love to know that you support our blog.

Thanks so much in advance for voting.

Your bloggers,

Barbara, Sara and Lauren

 

 

Understanding retinopathy of prematurity (ROP)

Friday, November 4th, 2016

baby-eyesRetinopathy of prematurity is an abnormal growth of blood vessels in the eye. It mainly affects babies weighing about 2¾ pounds (1250 grams) or who are born before 31 weeks of pregnancy. ROP affects about 14,000-16,000 babies in the United States each year. If your baby has ROP, getting treatment right away is really important. The disease can develop very quickly and cause vision problems or even blindness if it’s not treated.

What causes ROP?

During the last 12 weeks of pregnancy, the eye develops quickly. When a baby is born full-term, the growth of the blood vessels that supply the retina is almost complete. The retina then typically finishes growing the first few weeks after birth.

However, if a baby is born too early, the blood vessels may stop growing or not grow correctly. Scientists believe that the edge of the retina then sends signals to other areas of the retina for nourishment. This results in abnormal vessels growing. These abnormal vessels are fragile and can bleed easily and cause retinal scarring. If the scars shrink, they pull on the retina and cause it to detach.

Risk factors for ROP

Some things make a baby more likely than others to have ROP. They include:

  • Premature birth.
  • Apnea. This is when a baby’s breathing stops for 15 to 20 seconds or more.
  • Anemia. This is when the body doesn’t have enough healthy red blood cells to carry oxygen to the rest of the body.
  • Heart disease
  • Infection
  • Trouble breathing or respiratory distress
  • Slow heart rate (also called bradycardia)
  • Problems with the blood, including having blood transfusions.

Stages of ROP

ROP is classified into 5 stages:

  • Stage 1 – Mildly abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.
  • Stage 2 – Moderately abnormal blood vessel growth. These babies often get better without treatment and go on to have healthy vision.
  • Stage 3 – Severely abnormal blood vessel growth. Some of these babies get better without treatment, but others develop a condition called plus disease. This means the retina’s blood vessels get big and twisted. Plus disease is a sign that ROP is getting worse, but treatment can help prevent retinal detachment.
  • Stage 4 – Severely abnormal blood vessel growth and part of the retina detaches. These babies need treatment because part of the retina pulls away from the inside wall of the eyeball.
  • Stage 5 – Total retinal detachment. The retina is completely pulled away from the inside wall of the eyeball. Without treatment, a baby can have severe vision problems or blindness.

Treatment options

Laser or cryotherapy are the most effective treatments for ROP. Laser treatment uses a laser to burn and scar the sides of the retina. This stops abnormal blood vessel growth and prevents scarring and pulling on the retina. Cryotherapy uses a metal probe to freeze the sides of the retina, thereby preventing additional blood vessel growth.

Laser treatments and cryotherapy are done on babies with more advanced ROP, such as stage III.

Later stages of ROP require more intense treatments. Scleral buckle involves placing a silicone band around the white of your baby’s eye (called the sclera). This band helps push the eye in so that the retina stays along the wall of the eye. The buckle is removed later as the eye grows. If it isn’t removed, a child can become nearsighted. This means he has trouble seeing things that are far away.

In a vitrectomy, the doctor removes the clear gel in the center of your baby’s eye (called the vitreous) and puts saline (salt) solution in its place. Your baby’s provider can then take out scar tissue, so that the retina doesn’t pull. Only babies with stage 5 ROP have this surgery.

About 90% of infants with ROP fall into the mild categories and do not need treatment. But ROP can get worse quickly so early diagnosis and appropriate treatment (if needed) are very important. Your baby should be seen by a pediatric ophthalmologist. This is a doctor who identifies and treats eye problems in babies and children. The first eye exam should take place 4 to 9 weeks after birth, depending on when your baby was born.

You can read more about ROP on our website.

If your baby has ROP, visit our online community at Share Your Story to find a network of parents of babies with ROP. You can connect with them for support and comfort throughout your baby’s treatment.

Have questions? Text or email us at AskUs@marchofdimes.org.

It’s Prematurity Awareness Month – Come chat with us!

Monday, October 31st, 2016

parents in the NICU

We have several Twitter chats scheduled in November, in honor of Prematurity Awareness Month.

Please join us:

Wednesday, November 2 at 1pm ET with neonatologist Dr. Suresh of Texas Children’s Hospital. Use #preemiechat

Topic:  Prematurity – causes, complications, and coping in the NICU

 

Wednesday, November 9 at 2pm ET with Mom’s Rising. Use #WellnessWed

Topic: Can your preconception health reduce your chances of giving birth early?

 

Tuesday, November 15th at 2pm ET with Genetic Alliance and Baby’s First Test. Use #preemiechat

Topic: Is prematurity caused by genetics? Can it run in families?

 

We hope to see you on Twitter!

For questions or more information about these chats, text or email AskUs@marchofdimes.org

birth announcement

Safe sleep: room share, don’t bed share

Friday, October 28th, 2016

cropped sleeping babyIn an update to their safe sleep guidelines, the American Academy of Pediatrics (AAP) says that infants should sleep in the same room, but not the same bed, as their parents ideally for the first year of life, but for at least the first 6 months. Evidence suggests that sleeping in the parents’ room but on a separate sleep surface decreases the risk of sudden infant death syndrome (SIDS) by as much as 50%. In addition, this sleeping arrangement is most likely to prevent suffocation, strangulation, and entrapment that may occur when the infant is sleeping in the adult bed. The AAP’s safe sleep recommendations include:

Back to sleep for every sleep. Your baby should be put on his back every time, by every caregiver until he is 1 year old. Side sleeping is not safe and is not advised. Premature babies should be placed on their backs to sleep as soon as possible. The AAP states, “Preterm infants are at increased risk of SIDS, and the association between prone [stomach] sleep position and SIDS among low birth weight and preterm infants is equal to, or perhaps even stronger than, the association among those born at term.”

Use a firm sleep surface, such as a crib mattress covered with a tightly fitted sheet. Use only the mattress made for your baby’s crib. The mattress should fit snugly in the crib so there are no spaces between the mattress and the crib frame. The mattress shape should stay firm even when covered with a tightly fitted sheet or mattress cover. Don’t let your baby sleep in his carrier, sling, car seat or stroller. Babies who sleep in these items can suffocate. If your baby falls asleep in one of them, take her out and put her in her crib as soon as you can.

Babies should sleep in the parents’ room but on a separate sleep-surface. Parents should not bed-share. Bed-sharing is the most common cause of death in babies younger than 3 months old. Keep your baby’s crib close to your bed so your baby is nearby during the night. Share your bedroom with your baby but not your bed.

Breastfeeding is recommended. Breastfeeding is associated with a reduced risk of SIDS.

Keep soft objects and loose bedding away from the sleep area. Crib bumpers, pillows, blankets, and toys in the crib put your baby in danger of getting trapped, strangled or of suffocating.

Offer your baby a pacifier at nap time and bedtime. It is not clear why, but studies show that pacifiers protect your baby from SIDS. This is true even if the pacifier falls out of the baby’s mouth. However, don’t hang the pacifier around your baby’s neck or attach the pacifier to your baby’s clothing or a stuffed animal.

Avoid smoke exposure, alcohol, and illicit drugs during pregnancy and after birth. Babies who are around secondhand smoke are more likely than babies who aren’t to die of SIDS. And there is an increased risk of SIDS with maternal use of alcohol or illicit drugs.

Avoid overheating and head coverings. It is difficult to provide specific room temperature guidelines but in general, dress your baby appropriately for the environment. A blanket sleeper can keep your baby warm without covering his head or face.

Avoid the use of sleep positioners, wedges, or other devices that claim to reduce the risk of SIDS. Don’t use home cardiorespiratory monitors as a way to reduce the risk of SIDS. These monitors track a baby’s heart rate and breathing. Some babies need this kind of monitor because of medical problems, but this is rare. There’s no evidence that the monitors help reduce the risk of SIDS in healthy babies.

Give your baby supervised tummy-time while he is awake. Babies need to develop their neck, shoulder and arm muscles and tummy time helps. You can find some tummy time activities here.

It is important that all people who will care for your baby know these guidelines and follow them to keep your baby safe while he sleeps.

Have questions? Text or email us at AskUs@marchofdimes.org.

Respiratory Therapists help babies and families breathe easier

Wednesday, October 26th, 2016

help-breathingIf your baby is in the neonatal intensive care unit (NICU), it can be nerve wracking to see him hooked up to machines, especially if he is having difficulty breathing. This is when a respiratory therapist (RT) can help.

“If a baby needs respiratory support, parents should not be afraid. We give them only what they need” says Ana Anthony, a respiratory therapist at Children’s National Health System in Washington, D.C., one of the finest children’s hospitals in the nation.  Ana notes that “Every day may be a different challenge. The babies will go through ups and downs – the body is very complex. Our goal is to have the baby breathe on his own.”

It’s Respiratory Care Week, a time to recognize the respiratory care profession and to raise awareness for improving lung health. According to the American Association for Respiratory Care, “Respiratory therapists provide the hands-on care that helps people recover from a wide range of medical conditions.”

Respiratory therapists work in a variety of settings including a hospital NICU. Babies born too early run the risk of having breathing problems because their lungs may not be fully developed. Other babies might have breathing issues because of an infection or birth defect.

Due to numerous medical breakthroughs, more and more babies who need treatment for breathing problems or disorders benefit from respiratory therapy. In fact, neonatal respiratory therapy has become its own medical sub-specialty. A neonatal-pediatric RT is trained to use complex medical equipment to care for the smallest babies with mild to severe breathing challenges. They visit their patients daily, as often as needed.

You may have been introduced to your baby’s respiratory therapist if you have a baby in the NICU. A respiratory therapist would have evaluated your baby’s breathing soon after your baby arrived. The RT looks to see if your baby is breathing too fast, if the breaths are shallow, or if your baby is struggling to breathe. Then, together with the NICU healthcare team of doctors, nurses and other specialists, the RT develops a care plan to help your baby.

Respiratory therapists are rigorously trained, first earning a college degree and then specific certifications. For example, Ana holds several credentials: a BSRC (bachelor’s degree in respiratory care), RRT-NPS, (registered respiratory therapist with a neonatal pediatrics specialty), AEC (asthma education certification) and ECMO (extra corporeal membrane oxygenation). If these titles sound impressive, it’s because they are! RTs are put through intense education and hands-on training and stay current with breakthroughs or changes in the field by obtaining different certifications.

Ana Anthony speaks for all RTs when she says “We love what we do and strive to have the best outcome possible for all our patients.”

 

You can learn more about respiratory issues that preemies may face, in our article. Did your baby receive care from a respiratory therapist? Tell us about your experience.

Have questions? Text or email AskUs@marchofdimes.org.

Note:  This post is part of the series “Delays and Disabilities: How to get help for your child.