Posts Tagged ‘hydrocephalus’

Get ready – tomorrow is World Birth Defects Day

Wednesday, March 2nd, 2016

baby with cleft lipEvery parent wants a healthy baby. But, the reality is that many babies are born with birth defects.

Some birth defects are clearly seen at birth. Other times it may be weeks, months or even years before the birth defect is discovered. There are thousands of different birth defects. Some are common while others are rare.

Here are a few facts about birth defects

  • Every 4 ½ minutes, a baby is born with a birth defect in the United States. That’s 1 in 33 babies.
  • About half of all birth defects have no known cause. The other half are caused by genetic conditions (such as cystic fibrosis or sickle cell disease) or a combination of factors.
  • Some birth defects have decreased in prevalence, such as cleft lip and palate, while others have increased, such as gastroschisis.
  • Birth defects are the leading cause of death in the first year of life. Sadly, babies who survive often face a lifetime of disabilities.
  • Birth defects affect all races and ethnicities.
  • Worldwide, more than 8 million babies are born each year with a serious birth defect.
  • Learn what you can do to prevent certain birth defects.

Here’s what’s new

The PUSH! Global Alliance – People United for Spina Bifida and Hydrocephalus -is launching tomorrow for World Birth Defects Day. The mission is to provide a collective global platform for all organizations to work towards research, prevention, care, and improved quality of life for people with spina bifida or hydrocephalus. Check them out at pu-sh.org.

Help us raise awareness

You can observe World Birth Defects Day by participating in social media activities and sharing a story or picture about the impact of birth defects on you and your family.

If you are a health care professional, speak about the steps a woman can take to help lower her risk of having a baby with a birth defect. Lend us your voice! Here’s how:

  • Join the buzzday on Twitter tomorrow, March 3rd – #WorldBDDay
  • Register to be a part of the Thunderclap – a message will be sent out at 9:00 a.m. EST tomorrow to help raise awareness.

The March of Dimes and over 60 other international organizations working for birth defects are joining World Birth Defects Day. We hope you’ll join us, too!

 

If your preemie needs surgery

Friday, January 14th, 2011

As if parents of a premature baby don’t have enough to worry about, sometimes their baby needs surgery. Some babies require surgery to repair a heart defect, or NEC (necrotizing enterocolitis – a serious problem with the intestines) or other bowel condition. Some require the surgical insertion of a central venous line to receive special nutrition or antibiotics. Others may need a shunt placed to drain excess fluid from the brain, or hernia repair, or surgery to prevent reflux…

Preemies: The Essential Guide for Parents of Premature Babies can be a valuable tool for parents. When discussing possible surgery for a baby, the authors offer four important points for parents to consider:

1 – Do you know why your baby needs surgery, what the benefits and risks of the procedure are, how urgent it is, and what’s involved in her recovery? In other words, do you know enough to give “informed” consent for the operation?

2 – Do most doctors agree on the best treatment for your baby? If there are alternatives to surgery, do you know their risks and benefits, and what would happen to your baby if surgery weren’t done?

3 – Were you and your partner given enough time to reflect, have family discussions, and reach a considered decision about your baby’s surgery? Are your values and feelings being taken into consideration by your baby’s doctors? Has the medical staff been supportive?

4 – Do the doctors and nurses know how to reach you shortly before, during and after the surgery?

The main focus here is to gather as much information as you can.  Write down your questions whenever they pop up so you won’t forget any of them, and then review them with your baby’s doctors. There is no such thing as a stupid question, so never be shy about asking a question or speaking up if you don’t understand. This is true at any time, while in the hospital and throughout your child’s life.  Communicate – information will help you make the best decisions.