http://www.marchforbabies.org/team/t1364045
Thursday, April 8, 2010
2010 Triangle March for Babies
http://www.marchforbabies.org/team/t1364045
Friday, November 13, 2009
CDC Study Links 2 Antibiotics to Birth Defects
CDC Study Links 2 Antibiotics to Birth Defects
No added risk was found, however, for most commonly used infection-fighters
Posted November 2, 2009
By Jennifer Thomas
HealthDay Reporter
MONDAY, Nov. 2 (HealthDay News) -- Taking antibiotics during pregnancy does not raise the risk for most birth defects, though there are some exceptions, new research has found.
Penicillin, which is the most commonly used antibiotic during pregnancy, as well as erythromycin, cephalosporins and quinolones, other widely prescribed antibiotics, were not associated with increased risk for about 30 different birth defects.
However, the study found that two types of antibiotics were linked with a higher risk for several birth defects: nitrofurantoins and sulfonamides, sometimes called "sulfa drugs," which are prescribed for urinary tract and other infections.
Women whose children had anencephaly, a fatal malformation of the skull and brain, were three times more likely to have taken sulfonamides, the study found. Sulfonamides were also tied to an increased risk for such heart defects as hypoplastic left heart syndrome and coarctation of the aorta, choanal atresia (a blockage of the nasal passage), transverse limb deficiency and diaphragmatic hernia, an abnormal opening in the diaphragm that results in severe breathing difficulties.
Nitrofurantoins were also associated with multiple birth defects, including anophthalmia and microphthalmos (eye defects) and several congenital heart defects. Mothers whose children were born with a cleft lip or cleft palate were twice as likely to have taken nitrofurantoins, the study found.
But pregnant women should not be overly worried if they need an antibiotic to treat an infection during pregnancy, stressed the study's lead author, Krista Crider, a geneticist with the National Center on Birth Defects and Developmental Disabilities, part of the U.S. Centers for Disease Control and Prevention.
"The most important message is that most commonly used antibiotics do not seem to be associated with the birth defects we studied," Crider said.
The findings are published in the November issue of Archives of Pediatrics & Adolescent Medicine.
Crider and her colleagues analyzed data on more than 13,000 women whose babies had one of more than 30 birth defects, including cleft palate, heart or limb defects and anencephaly. They compared the women's rates of antibiotic usage, from the month leading up to pregnancy through the end of the first trimester, with that of almost 5,000 women whose children did not have a birth defect. The data was culled from the National Birth Defects Prevention Study, which began in 1997 and includes about 30,000 women from 10 states.
Information on the impact of many prescription drugs on developing fetuses is sorely lacking, Crider pointed out. Much of that stems from the fact that ethical considerations preclude conducting drugs trials in pregnant women, she said.
Though many antibiotics have been used safely for decades, resistant strains of bacteria are forcing doctors to use a wider array of antibiotics. For some, little data exist.
The researchers found that about 30 percent of women took an antibiotic between the three months prior to conception and the end of the pregnancy.
Even antibiotics that generally were safe were found to be associated with a few specific birth defects. Women whose babies were born with a certain type of limb malformation were three times more likely to have taken penicillin. Erythromycin, cephalosporins and quinolones were also associated with an increased risk for one or two specific birth defects.
However, the researchers said they did not know if the birth defects were caused by the antibiotics or the underlying infection.
One expert said women need to remember the good antibiotics can do mom and baby, as well. Though many pregnant women want to avoid taking any drugs during pregnancy, infections pose a risk to mother and baby and often need to be treated, said Dr. Jennifer Wu, an obstetrician-gynecologist at Lenox Hill Hospital in New York City.
"Untreated infections during pregnancy can lead to severe consequences, such as maternal sepsis [blood infection] and preterm labor," Wu said. "Yet many patients are afraid to take medications such as antibiotics during pregnancy."
The study "supports the evidence that antibiotics are safe for pregnant women," she said. "It is reassuring for doctors and patients to have more data on necessary drugs for pregnancy."
Crider also stressed that the chances of having a baby with a birth defect remain small, even if an antibiotic has been linked to an elevated risk. For example, the risk of having a child with hypoplastic left heart syndrome is about one in 4,200. Sulfonamides were associated with a three-fold increase, making the likelihood about one in 1,400, she said.
Brand names for nitrofurantoins include Furadantin, Macrobid and Macrodantin. Bactrim and Septra are among the brand names of sulfonamides.
Given the data, Crider said, women should be cautious about taking either of those types of drugs during pregnancy and should discuss other options with their physicians,.
According to the study, the overall risk for having a child with a birth defect is about three percent.
The study did not look at chromosomal defects, including Down syndrome.
More information
The U.S. Centers for Disease Control and Prevention has more on birth defects.
Wednesday, May 6, 2009
“Our Heartbreaking Choices” by Christie Brooks

by Christie Brooks, mom to cherub Madison Brooks
Pregnancies aren’t always perfect. Prenatal testing can reveal life-threatening issues with the baby’s health, which can leave a parent contemplating the unthinkable- ending the pregnancy. Christie Brooks, a CHERUBS member, made the heartbreaking decision to interrupt her pregnancy in 2003 when her baby was diagnosed in utero with a left-sided diaphragmatic hernia. Through online support networks she was able to connect with other mothers who made the same agonizing decision, but for a variety of different anomalies. Together they put their stories in a book and self-published it last October. The book, “Our Heartbreaking Choices,” contains the personal stories of 46 women who interrupted their much-wanted pregnancies for medical reasons. The purpose of the book was to share their stories in the hopes of helping other parents who have undergone a similar loss to feel less alone, less isolated, and less stigmatized.
This book is available on Amazon.com
http://www.amazon.com/Our-Heartbreaking-Choices-Interrupting-Much-Wanted/dp/0595530478
**CHERUBS is not a pro-life or pro-choice organization. Our mission is to help all CDH families and make sure that they have all the information that they need to make informed choices
Friday, April 10, 2009
March of Dimes Walk for Babies
Please support Karen Myers as she participate's in March of Dimes Walk for Babies' campaign.
http://www.marchforbabies.org/personal_page.asp?w=111019059&u=kmmyers307
May 16, 2009
200 North Crickett Drive
San Antonio, TX 78226
In Loving Memory of (cherub) Kaleigh 2002 and William 2005
Posted by their mom, Karen:
This will be our family's 5th year to participate in March for Babies for March of Dimes and I am happy to say we have had great success with the help of our family and friends. The March of Dimes has supported research for the birth defect Congenital Diaphragmatic Hernia (CDH) that Kaleigh was born and passed away from. We found out when I was 20 weeks pregnant that she would be born with this devastating birth defect and the Dr.s gave her a 60% chance to live. From the moment she was born (full term on her due date) she faced the fight of her life. She was immediately placed on a ventilator and after 3 days of fighting to keep her stable she was placed on Extra Corporeal Membrane Oxygenation (ECMO) a heart lung bypass machine. She spent 9 days on it then was taken off to have surgery to repair her defect and take her stomach, intestines, spleen and tip of her liver out of her chest and place them back into her abdomen where they belonged so what little lung she had could start to grow and work. Unfortunately on her 17th day of life her body couldn't oxygenate itself even with artificial help due to such immature and malformed lungs and we held our daughter for the very first and last time as her heart stopped beating. She gave us the most precious 17 days and fought with all her might and we love and miss her. Unfortunately our family then had to experience the heartbreak all over again as we learned when I was 27 weeks pregnant that our son William Logan's heart had stopped beating and he was born an angel due to Non-immune Hydrops Fetalis. It broke our hearts knowing he would never know his mommy or daddy's touch. The March of Dimes is wonderful in providing detailed and helpful information for families with children born with birth defects. I know they were a great resource for me and my family. The funds we raise may seem like a drop in the bucket but every little bit counts and hopefully one day I will stop meeting families who have had to endure the heartbreak of loosing a child, whether it be to prematurity, birth defects or illness.
Please join our family by signing up to walk on our team, fund raise for the team or by donating.....we can save babies together.
Love,
The Myers Family
Will, Karen, Alec, Aubrey and Jackson
Remembering Kaleigh and William Logan always........FOREVER OUR SUNSHINES!!
The mission of March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality.
Sunday, November 9, 2008
Finally the government caught up on something CHERUBS has known for years!
http://www.govtrack.us/congress/bill.xpd?bill=s110-1810
Several years ago CHERUBS started a movement for better ultrasound technology, information for parents diagnosed with a sick child in utero and support referrals. A parent sent me the link above this morning - Congress finally passed this! How wonderful for all CDH families and families of children born with any birth defect or genetic anomaly! Below is one of the logos that we used back in the day when we petitioned for for this act. We set it aside to work on other things, plus it was getting too sticky (public charities cannot lobby Congress). But isn't it wonderful that it has finally been passed!?


Summary from the site:
10/8/2008--Public Law.
Prenatally and Postnatally Diagnosed Conditions Awareness Act -
Section 3 -
Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through either the Director of the National Institutes of Health (NIH), the Director of the Centers for Disease Control and Prevention (CDC), or the Administrator of the Health Resources and Services Administration (HRSA), to authorize and oversee certain activities relating to Down syndrome or other prenatally or postnatally diagnosed conditions. Includes among such activities the awarding of grants, contracts or cooperative agreements to eligible entities to: (1) collect, synthesize, and disseminate current evidence-based information relating to such conditions; and (2) coordinate the provision of, and access to, new or existing supportive services for patients receiving a positive diagnosis for such conditions. Includes within such supportive services: (1) the establishment of a resource telephone hotline; (2) the expansion of the National Dissemination Center for Children with Disabilities; (3) the expansion of national and local peer-support programs; (4) the establishment of a national registry, or network of local registries, of families willing to adopt newborns with such conditions; and (5) the establishment of awareness and education programs for health care providers who provide, interpret, or inform parents of the results of prenatal tests for such conditions.
Requires the Secretary to place an emphasis on funding partnerships between health care professional groups and disability advocacy organizations in distributing funds.
Requires a grantee under this Act to make available to health care providers of parents who receive a prenatal or postnatal diagnosis: (1) up-to-date, evidence-based, written information concerning the range of outcomes for individuals living with the diagnosed condition, including physical, developmental, educational, and psychosocial outcomes; and (2) contact information regarding support services, including information hotlines, resource centers or clearinghouses, national and local peer support groups, and other educational and support programs. Requires information provided to be culturally and linguistically appropriate and to be approved by the Secretary.
Requires the Government Accountability Office (GAO) to report to Congress concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
Tuesday, September 2, 2008
CDH Research Fund
http://www.firstgiving.com/cdhresearch
You can donate there in honor / memory of a cherub or through PayPal at http://www.cdhresearch.org Or click the donate button below:
This fundraising page is to help raise funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers - offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $500 per month. Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $6000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.
http://www.cdhresearch.org
This web site is a project of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH.
CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatment of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.
Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.
Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year - in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) - yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!
The cause of Congenital Diaphragmatic Hernia is not yet known.
50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.
Looking for support dealing with Congenital Diaphragmatic Hernia? Make sure to visit CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
Like the CDH logo or want to purchase some CDH Awareness items? Make sure to visit CHERUBS Store where you can buy 100's of items with the Official Congenital Diaphragmatic Hernia Awareness Ribbon, the CDH logo, the CDH Anatomy shirt and much more.
