Two Birth Defects

SB I'm assuming is Spina Bifida? If it is Spina Bifida, you should contact your OB Doctor and kindly insist that a Pediatric Specialist in spinal birth defects attend your delivery as well as a Pediatric Cardiologist, in addition to what other types of medical assistance your baby will need.

If you have time, start interviewing Pediatricians now. I think it would be a good idea to have a Pediatrician who is not a "specialist" to be the "ring master" or the "gate keeper" of the health care issues that you and your baby will be dealing with.

The babies Pediatrician is someone who can help you make decisions regarding treatment. A pediatrician that is not a cardiologist or an orthopedist can treat a simple ear infection, as well as give you guidance.

I know this is a lot of information, it must be overwhelming to have 2 birth defects diagnosed in your unborn child. I am wishing and praying that you have a good support system. I pray you are given wisdom, knowledge, courage and an excellent medical care team for both you and the baby.

You can do this, many babies with these problems are helped tremendously, when they receive early treatment. And by early treatment, I do mean in the delivery room.
A.

I do not, but my best friend has one son with SB. It came with lots of other health problems and LOTS of stress and emergency room runs before he was one.

He is 3 now, is developmentally on track (obviously, he has some physical limitations but he is doing every else just fine) and is a sweet, sweet, kid.

My 14-month-old son Chase was born with HLHS and is simply amazing! Unfortunately I cannot comment on the SB diagnosis but I can say there is HOPE for babies with HLHS!!! When I first heard my son's diagnosis at our 20-week ultrasound, I was a complete mess and tried to research it online. Unfortunately most of the info about it is so outdated it makes it seem hopeless. Please know that is NOT the case!

When you get a moment, please go to http://heartsisters.blogspot.com. This site is run by a group of 10 moms to HLHS children and offers support as well as informative links on accurate data regarding HLHS. Remember, there IS hope!

((Heart hugs))

K.
http://www.mom2lo.com

Dear K.-

My daughter has HLHS. She was a premature, so her issues were complicated by lung issues as a result of the prematurity...

Please private me if you want to talk at all.

The pediatric cardiology community is rather small (in that the docs and surgeons conference regularly and all know one another). Loma Linda (I think is the name) is one of the centers we considered for our daughter...but ultimately ended up at children's hospital of philidelphia.

I am sure you are VERY scared right now...but DO know that there are options in terms of this series of cardiac challenges...and so many kids do very well.

You are in my thoughts and prayers...as is your little one. Again...feel free to private me if you wish.

"Cyber Hugs"!!!

Michele/cat

I just read a ton of valuable information from http://www.mayoclinic.com Here is a little blurb that I thought was helpful. Good luck! With all the love and support your bound to give he little guy, he will make it by leaps and bounds. Just remember you need support too, don't be afraid to ask.

Coping and support
By Mayo Clinic staff
News that your newborn child has a devastating condition such as spina bifida can naturally cause you as a parent to feel grief, anger, frustration, fear and sadness. There's good reason to hope, however, because most people with spina bifida live active and productive lives.

Even with severe spina bifida, most children can walk for at least short distances, usually with the assistance of braces, canes or crutches, although they may require wheelchairs for longer distances. Using these devices can help a child compensate for his or her condition and gain more independence.

Many children with spina bifida have normal intelligence. But they may need early educational intervention for learning problems, and they may need extra help from teachers and counselors to adapt to school. A physical disability like spina bifida can also cause emotional and social problems. Children with spina bifida need encouragement to participate in activities with their peers and to lead independent lives, within their physical limitations and capabilities. It may be helpful to remember that these children have never known what's accepted as normal function and often adapt to their condition in remarkable ways.

Support groups
If your child has spina bifida, you may benefit from finding a support group of other parents who are dealing with the condition. Talking with others who understand the challenges — and rewards — of living with spina bifida can be helpful.

If you contact Parents Helping Parents ###-###-#### www.php.com they may be able to connect you with another parent who has had similar experiences. They are very helpful in connecting you with other parents and local resources. Even if you are not in the bay area you should give them a call.

My 8 month old daughter was born with HLHS (diagnosed at 19 weeks gestation.) We live in Arizona and flew to Philadelphia (Children's Hospital of Philadelphia-CHOP) to deliver her and undergo her first of 3 open heart surgeries. She's had 2 open heart surgeries at CHOP and is doing great. CHOP is top-ranked and has a special delivery unit so you can deliver in the children's hospital and stay with your baby while they undergo treatment. I highly reccomend you look into them. Not sure where you live in the US, but I will never regret our decision to travel for the best care possible. Children's Hospital Boston (CHB) also has a great program. You can also review US News and World Report for cardiac center rankings for the entire country. If you're looking for additional support re congenital heart defects, visit www.heartsisters.blogspot.com. There is HOPE for children with CHDs. (sorry this is CHD heavy, I don't know much about SB.)