Fetal Surgery

I first learned about Fetal Spina Bifida Surgery when I was emailed the picture of Samuel Armas dubbed the "Hand of Hope" soon after Rylie was born.

I think this picture is amazing!

 Prenatal Surgery is done between 19-26 weeks of gestation.




The results show that 42 percent of children who had undergone surgery in the womb were able to walk unassisted at age 3 compared with 21 percent of those who received the surgery postnatally.  Within a year after fetal surgery, children were less likely to need a shunt, a surgically implanted tube that drains fluid from the brain.

I wonder what Len and I would have decided had we been presented with this option and I honestly don't know.  I'm continuously fascinated with this and hope some day, its not necessary to even consider. 

Study indicates Surgery may benefit babies - Spina Bifida Association of Canada

CTV NEWS - Prenatal Surgery for Spina Bifida

The Children's Hospital of Philidelphia

Spina Bifida Genetics Research Project

What's the Spina Bifida Genetics Research Project About? This study continues our research to identify genetic factors that influence spina bifida (myelomeningocele). In this phase of the project, we are analyzing the genes involved in how our body utilizes the vitamin folic acid.

The Spina Bifida Genetics Research Project needs both mothers who have a child affected by spina bifida and mothers who do not have a child affected by a birth defect.

HOW DO I PARTICIPATE?  

Latex Alert

Recent studies have shown that up to 73% of individuals with spina bifida and/or hydrocephalus are allergic to latex (natural rubber latex).

Since Rylie has not developed an allergy to latex, she is considered Latex Alert.  This means she needs to avoid contact with latex so she does not develop the allergy.  This means no latex balloons, bandaids, gloves, erasers and even bananas!  Some of the antigens in natural latex are structurally identical to antigens in some fruits and nuts, and occasionally latex-allergic people develop symptoms after consuming these
foods.

What are the symptoms of latex allergy?

 http://allergies.about.com/od/medicationallergies/a/latexallergy.htm

In general, there are two ways a person can experience allergic reactions to latex, immediate reactions and delayed reactions.
Delayed latex allergy. Delayed reactions to latex consist of itchy, red and mildly swollen rashes that appear only at the sites of contact with the latex product. These rashes typically appear within 12 to 24 hours after exposure, and are not life threatening. These reactions are similar to those caused by poison oak (contact dermatitis), and are due to other chemicals used in the making of latex, rather than the latex protein itself.
Immediate latex allergy. These potentially serious reactions occur within minutes of exposure and may cause hives, itching at the site of contact or all over, tightness of the throat, wheezing, difficulty in breathing, anaphylaxis and even death. Most people may experience these reactions only upon contact with the latex product. Others are so sensitive that they may have a reaction after being given a drug stored in a bottle with a latex stopper or after breathing the powder that comes off latex surgical gloves.


Rylie has a medical alert bracelet but I think this one is fun!  I might have to order it!

The Brainy Store

Canada Helps

Rylie Raises Awareness Fundraiser is ready to accept donations online.  Click on Canada Helps and choose Donate Now.  On the drop down menu, choose Rylie Raises Awareness.

Thank you for your support!   

FOLIC ACID

All women should take vitamins that contains folic acid BEFORE they get pregnant.  WHY BEFORE?
Neural tube defects occur 25 to 29 days after a woman gets pregnant. At that time, many women are not even aware that they are pregnant.
Because these defects form so early, you should begin taking vitamins that contain folic acid before you get pregnant. 

It's hard to get enough folic acid from your diet.  That's why it's better to take vitamins that contain at least 400mcg or 0.4mg of folic acid and enhance your intake with folate rich foods.
Take a look at this chart at www.folicacid.ca.
Romaine lettuce is an excellent source of folate.  One cup will provide you with approximately 0.055mg.  BUT you need at least 0.4mg a day so you would need to eat just over 7 cups of romaine lettuce a day to just get the minimum!

When I volunteer at the prenatal fairs, I see many woman pass by my booth with just a glance.  I really hope it's because they already know all about folic acid and don't need to stop for information but know that's often not the case.  Many woman think they are covered because they started taking folic acid as soon as they found out they were pregnant and many woman are optimistic that the worst case scenario just won't happen to them and I can certainly understand that.

When woman do stop to chat, it's a difficult message to hear when they are already expecting and they didn't know that folic acid was suppose to be taken before they got pregnant.  So, I tell them the statistics!
In Canada, approximately 1 in 1300 babies are born with a neural tube defect.  If they would have taken at least 0.4mg of folic acid, it would have helped reduce the risk by more than 70%!

ANY WOMAN can have a child with a neural tube defect.  There are high risk woman that should take a lot more folic acid prior to conceiving and if you fall in a high risk group, should consult with your family physician or family planner.

I'm not an expert on folic acid or on neural tube defects and defer the questions I don't know the answer to back to the Folic Acid website or the Spina Bifida Association of Ontario.  I'm a mom of a child with Spina Bifida and when Rylie was born, the statistics were 1 in 700 babies were born with a neural tube defect in Canada each year and now its 1 in 1300.  I know how important Folic Acid education is and how it can make a difference!

AND AS I TELL WOMAN AT THE PRENATAL FAIRS....

Now you know!  Tell all your girlfriends they should take at least 0.4mg Folic Acid! 

Spirit Wheel Walk Run

Every year the Spina Bifida Association of Ontario runs a fundraiser called Spirit Wheel Walk Run to raise money for awareness initiatives.  This is especially important because we believe every woman of child bearing age should know to take a multivitamin containing Folic Acid.  Folic acid has been proven to help reduce the risk of neural tube defects (NTD's) by more than 70% if taken before pregnancy.

Spina Bifida has touched our lives.  Our 12 year old daughter Rylie was born with Spina Bifida and Hydrocephalus.   We've had amazing people in our lives to help us along the way and to try to give back, we have always started with the Spina Bifida Association of Ontario! This year we are raising money by holding a garage sale which we called Rylie Raises Awareness with all proceeds going to SBHAO. We will also have a BBQ and a sucker tree for prizes that will be ran by Rylie herself! We've asked our family and friends to donate items they no longer need or even just provide us with a case of pop/water, etc for us to sell.  Everyone has stuff around the house and we figured we might raise more money selling items then just asking for a straight donation!  The response has been amazing!  The sale isn't until June so let the collecting begin!