Why I Walk Wednesday: Lucy

At their initial prenatal visit, Lucy’s parents found out they were having monochorionic diamniotic twins, identical twins who share a placenta but have separate amniotic sacs. From early on, one twin was measuring much smaller and they were diagnosed with early onset twin to twin transfusion syndrome, a dangerous and potentially fatal complication. Furthermore, at the first trimester screening, the smaller baby was diagnosed with holoprosencephaly, a severe brain abnormality. The doctors thought it was likely that both of the twins had a severe chromosomal abnormality; however, the bigger twin had appeared normal on all ultrasounds. Due to the TTTS and the very sick twin, the difficult decision was made to have a selective cord coagulation laser procedure by the fetal therapy team at Johns Hopkins in hopes to save the other twin. After much testing (two amniocentesis and one CVS procedure), it was determined that the remaining baby was a healthy girl and did not share her sister’s chromosomal deletion. Then, just shy of 28 weeks, at a routine prenatal visit, Lucy’s mother was diagnosed with preeclampsia and admitted after presenting with high blood pressure and proteinuria. She spent the next 22 out of 27 days in the hospital being closely monitored until on Feb 17th, Lucy was born at 31 weeks, weighing just 2lbs, 8.6 ounces. She was born via C-section after a failed induction attempt. She spent the next 45 days in the NICU and was able to go home two weeks shy of her due date. She is now a healthy, happy one-year-old. Lucy's mom is a nurse practitioner at The Pediatric Center who participates in March for Babies because she knows that March of Dimes is hope for the future and improved pregnancy and birth outcomes.

Why I Walk Wednesday: Jaxon

At 33 weeks, Jaxon’s mother discovered that she was leaking amniotic fluid. She was admitted to the hospital and put on an IV antibiotic to prevent an infection to Jaxon. The hope was to delay Jaxon’s arrival until 35 weeks. However, he was delivered by emergency C-section within 4 hours. Jaxon’s dad was able to see him briefly before he was taken to the NICU for unstable oxygen levels. He was put on a C-PAP because he could not breathe on his own, and he was in an incubator to help control his temperature. His liver was also not functioning correctly. Jaxon’s parents spent as many hours as possible by his side. Thanks to the wonderful care in the NICU, along with the kangaroo care and breast milk he received, Jaxon was able to come home after only 16 days. Jaxon may only measure in the 5th percentile for his age, but he is now a happy, healthy, and inquisitive little boy. Jaxon and his family look forward to seeing you and your teammates at March for Babies this year.

Updated recommendations for newborn screening

Recently, two conditions were added to the federal Recommended Uniform Screening Panel (RUSP) for newborn screening:  Mucopolysaccharidosis type 1 (MPS1) and X-linked Adrenoleukodystrophy (X-ALD).

Newborn screening recommendations

All babies in the United States get newborn screening before they leave the hospital. Newborn screening looks for rare but serious and mostly treatable health disorders. Babies with these disorders often look healthy. But if the condition is not diagnosed and treated early, a baby can develop lasting physical problems or intellectual disabilities, or may even die. The RUSP is a recommendation from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) and is not enforced by law. Each state decides what conditions they test for on their newborn screening panel. Find out what conditions your state tests for here.

MPS1

Children with MPS1 cannot break down certain types of complex sugars. The build-up of these sugars interferes with the function of other proteins and causes problems in many tissues and organs. Children with MPS1 often have no signs or symptoms at birth. The age of onset of the condition, the symptoms, and the long-term outcome are variable. However, for those who are severely affected, the use of umbilical cord blood or bone marrow transplants may be beneficial.  Enzyme replacement therapy (ERT) is also approved by the U.S. Food and Drug Administration for children with MPS1 who do not have central nervous system involvement, and it appears that the age at which ERT is initiated influences the outcome.  Newborn screening for MPS1 will permit earlier initiation of ERT.

X-ALD

X-ALD is a genetic disorder that occurs mostly in boys. In this disorder, the fatty covering (myelin) that insulates nerves in the brain and spinal cord is broken down. This reduces the ability of the nerves to relay information to the brain. X-ALD can cause serious and permanent disability or death.  The only effective treatment is early identification by newborn screening, and stem cell therapy (bone marrow or cord blood transplantation), sometimes along with other life-saving treatments.

“For both of these conditions, the critical importance of early diagnosis and intervention means that newborn screening is a critical tool for saving lives,” said Dr. Jennifer Howse, President of the March of Dimes. “The March of Dimes will be advocating across the nation for the addition of these two conditions to newborn screening panels in every state.  We urge states to take up this vitally important issue as quickly as possible to ensure that all newborns can benefit from these potentially life-saving tests.”

Why I Walk Wednesday: Tristan

Premature delivery was anticipated for Tristan, so his mother was given a round of drugs to develop his lungs and she had blood drawn three days a week. Tristan had a high heart rate, and the doctors were attempting to treat him in utero by administering drugs to his mother. After visiting the specialist for a weekly blood draw on July 3, Tristan’s mother was told to go to the hospital immediately. Tristan's heart was no longer responding to the drugs and fluid was beginning to build up around his heart. On July 4, Tristan was delivered by C-section at 30 weeks gestation. The delivery was uneventful, and after showing Tristan to his mother, he was whisked away to the NICU.

The first few days were vital because no regiment of medicine was helping Tristan get better, causing a code blue to be called multiple times. About three days later, they were able to stabilize him. Tristan required surgery to correct a patent ductus arteriosus (PDA), and eleven days after his birth, he had his first surgery. The next few weeks were challenging as Tristan went through tests, which revealed that his blood was abnormal and there was concern of no audible function in his right ear. Tristan developed jaundice, was sedated, and had to have four blood transfusions. As the weeks passed, even though the test results were not always favorable, he started to eat better and gain weight.

Despite the adversity he faced within the first few years of his life, Tristan has grown into an intelligent, perceptive, and loving boy. Tristan participates in March for Babies each year with his team Tristan’s Trotters. Join your local March for Babies at marchforbabies.org. 

Getting guilt-free time off

Few parents can afford the kind of support or home care that would truly provide the respite you need to recharge your batteries. Therefore, you need to be creative in trying to build in snippets of time off.

Parenting a preemie, a child with a birth defect, developmental delay or disability is all-consuming. The physical and emotional toll it takes on a parent can be so heavy that you may wonder how you will go on if you don’t get a break.

Here is what used to work for me:

I decided that every Wednesday was my day off. On that day, I would not make a bed, empty the dishwasher, do laundry (unless absolutely necessary), book doctor or therapy appointments, or otherwise do anything that I usually did on the other six days of the week. Returning non-emergency, non-important emails or phone calls could wait until the next day. After all, I was “off duty” – the usual daily chores could wait. I did not feel guilty that beds were unkempt, because after all, I was off duty. I did not care that if someone rang my doorbell, the house was not tidy because (you guessed it) I was off duty. Dinner was simple – leftovers or take out, on paper plates please! It was my day off so I didn’t have to cook or do dishes. All I had to do that day was take care of my children and myself, which was enough. Wednesday was the day I gave myself a free pass.

It may sound silly or overly simple, but it worked for me. I looked forward to that day in the middle of the week when I didn’t have to do all the things that I usually did on the other days of the week. It was a little way for me to give myself a reprieve without feeling guilty. After all, with most jobs, you get time off to recharge your batteries and become refreshed. Parents raising kids with special healthcare needs must have “time off,” too, even if they can’t physically get away.

Here is another approach I used when my kids got a bit older. I would tell them that at 9 pm I “turn into a pumpkin” (a la Cinderella). That meant they had to have homework done, backpacks packed, and questions asked because I was about to go into my room to unwind (usually by watching a TV show). I can still hear them telling each other “We better show mom this (whatever it was) fast because it is almost pumpkin time!” It was a way for me to know that my day had an end (sort of), and a way for them to respect that Mom needed time to relax. It was amazing how quickly everyone got used to the routine. I even got a night shirt with the words “OFF DUTY” on the front! (A little extra emphasis can be a good thing…haha!) The bottom line is that this method worked well for my family, and especially for me.

Let’s face it, your kids need you, and they need you to be fully functional. If you can’t get someone to help give you a break, maybe my little day-off scenario and “pumpkin” deadline will work for you.

If you have a method of how you get re-charged, please share.

 

Note: The mini-series on Delays and Disabilities has lots of info to help you if you have a child with special needs. Please feel free to comment and make suggestions. If you have questions, send them to AskUs@marchofdimes.org.

 

Tags: birth defects, coping, disabilities, parenting, preemies, respite, self-care, Special needs, time off

Why I Walk Wednesday: Amelia Keppel

Amelia Keppel was born two months too soon and weighed just 2 pounds, 3 ounces. During her two month stay in the Neonatal Intensive Care Unit (NICU), she received multiple blood transfusions and faced persistent breathing issues. Because the NICU was closed to siblings, her sisters, Maddie and Tess, did not get to meet Amelia face to face until she came home 63 days later. It was also her original due date. 

Amelia began receiving early intervention services when she was 6 months old, and she has always needed intensive learning support in school due to severe processing and archiving issues. 

Today, Amelia is 12 years old and enjoys horseback riding, swimming and acting. She will be joined by her spirited team "La Famiglia di Amelia" at March for Babies in Baltimore. You can find a walk near you and sign up at marchforbabies.org.

Is it possible to stop preterm labor?

This is a question we received recently through the March of Dimes website. Preterm labor is labor that happens too early, before 37 weeks of pregnancy. If you have preterm labor, your health care provider may recommend some treatments that may help stop your contractions and prevent health problems in you and your baby.

There are three kinds of medicines your provider may give you if you’re having preterm labor:

Antenatal corticosteroids (also called ACS). These speed up your baby’s lung development. They also help reduce your baby’s chances of having certain health problems after birth, such as:

• respiratory distress syndrome (RDS), a condition that affects a baby’s breathing
• intraventricular hemorrhage (IVH), bleeding in the brain, and
• necrotizing enterocolitis (NEC), a condition that affects a baby’s intestines.

Antibiotics. These kill infections caused by bacteria. You may need antibiotics to help prevent infections in you and your baby if you have Group B strep infection or if you have preterm premature rupture of membranes (also called PPROM). PPROM is when the sac around your baby breaks before 37 weeks of pregnancy.

Tocolytics. These slow or stop labor contractions. Tocolytics may delay labor, often for just a few days. There are many different types of tocolytics and not all of them are appropriate for everyone. If you have a health condition, like a heart problem or severe preeclampsia, some tocolytics may not be safe for you.

These treatments are not a guarantee to stop preterm labor. But if you’re having preterm labor, they may help you stay pregnant longer. Staying pregnant just a few days longer can be beneficial for your baby.

Make sure you know the signs of preterm labor:

• Contractions (your belly tightens like a fist) every 10 minutes or more often
• Change in vaginal discharge (leaking fluid or bleeding from your vagina)
• Pelvic pressure—the feeling that your baby is pushing down
• Low, dull backache
• Cramps that feel like your period
• Belly cramps with or without diarrhea

Call your health care provider or go to the hospital right away if you think you’re having preterm labor, or if you have any of the warning signs. Call even if you have only one sign. Early treatment may help stop preterm labor or delay it long enough so that you can get treatment with ACS or to get to a hospital with a neonatal intensive care unit (NICU). Learn more about preterm labor on our website.

Have questions? Email us at AskUs@marchofdimes.org.

 

Tags: antenatal corticosteroids (ACS), antibiotics, premature baby, preterm labor, signs of preterm labor, tocolytics, treatment for preterm labor

Why I Walk Wednesday: Danielle Matragrano

Every Wednesday during March for Babies season, we'll feature a local NICU to Now story. This week, we're featuring Danielle's story as recalled by her mom Jennifer.

It was the day of my 25 week checkup and the doctor said I needed to go to the Fair Oaks hospital because there was protein in my urine and my blood pressure was off the chart. We went straight to the hospital where I was told I was suffering from preeclampsia and they would have to perform an emergency C-section. We were transferred via ambulance to Fairfax Hospital where Danielle Grace Matragrano was born weighing only 1 pound, 2 ounces and was 10 inches long.  

We stayed in the NICU for 118 days and experienced a roller coaster of emotions. Danielle is now a healthy, active 4-year-old. She is involved in karate, dance, gymnastics and loves going to Disney World.

Make a difference for babies like Danielle by joining your local March for Babies! Register today at marchforbabies.org.

World Birth Defects Day 2016

More than 8 million babies worldwide are born each year with a serious birth defect. Birth defects are a leading cause of death in the first year of life, and babies who survive may be physically or mentally disabled, taking a costly toll on their families, communities and nations.

The March of Dimes and over 50 other international organizations working for birth defects are joining World Birth Defects Day, observed every year on March 3 to raise awareness of this serious global problem and advocate for more surveillance, prevention, care and research to help babies and children. We are urging the public, governments, non-governmental organizations, policymakers, researchers and health care providers around the world to help us work together toward a healthier future for children.

Birth defects affect all races and ethnicities. Everyone can get involved in raising awareness. Please observe World Birth Defects Day by participating in social media activities and share a story or picture about the impact of birth defects on you and your family.

What can you do?

1. Post an announcement on your blog, Facebook, Twitter or other social media platform.
2. Register to be a part of the Thunderclap — a message will be sent out at 9:00 a.m. EST on March 3 to help raise awareness
3. Join the Buzzday on Twitter on March 3. Plan to send one or more messages using the #WorldBDDay tag at some point during the day. Retweet both promotional and day-of messages to build our buzz for the day.

We look forward to having you join the conversation. Together, we can make strides to improve knowledge and raise awareness.

If you have questions, send them to AskUs@marchofdimes.org.

Tags: birth defects, March 3, Thunderclap, World Birth Defects Day