Help/insight: Brain Abnormalties Discovered

C.,

While I do not know anything about agenesis of the corpus callosum, but I do know quite a bit about hydrocephalus.

My son was born 4 weeks premature and had 2 IVHs (Intraventricular hemorrhages) 14 hours after birth resulting in seizures where his breathing would stop and then developed hydrocephalus when he was 10 days old and had brain surgery (at Johns Hopkins) when he was 14 days old to have a shunt put in. That is the short version. What we went thru in those first few hours, days & months was excruciatingly difficult - especially trying to keep all the stress and uncertainty from our then almost 4 and almost 6-year old daughters who just wanted to know why their brother was not home from the hospital.

The doctors had originally told us that he had grade 3 & 4 bleeds and the prognosis was anywhere from normal to CP, mental delays, paralysis or even death - my husband Googled way too much and he was really worried about the long-term prognosis. I just got myself thru every day believing that God had a reason for what my son (and family) was going thru. Once we got the the Pediatric Neurologists and Neurosurgery specialists at Johns Hopkins, we found out that he had grade 1 & 2 bleeds and his long-term prognosis was better, but still not "normal". Our little has one defied the odds and is now a normal, rambunctious 17 month old.

If you would like to talk or would like information on Pediatric Neurologists/Neurosurgeons, please feel free to contact me directly. I will be praying for you and your family, please let us know how it works out.

~ B.

I completely understand where you are coming from. My daughter, whom we lost because we caught the problem too late, had a heart disorder which turned into several disorders. I believed there was something wrong throughout my pregnacy but they kept blowing me off until 2 days before she passed inside me. Since then I have had 3 boys all of which I have had panic attacks waiting for the time to have ultrasounds, fetal MRIs and echocardiograms. My first 2 boys never showed any problems but my last who is only a year now, showed that he was possibly going to have downs or a more severe brain disorder. I was a mess throughout the pregnancy waiting on everything ... ultimately everything came out perfect even though right up to the time of delivery they warned us of the possiblities. I will keep you in prayer as well as your baby. The only thing I can offer you besides support is to try to keep busy with anything and try to stay positive (which I know personally is very very difficult...but works). If you want to PM me to chat, please do.

C.,
I am 32 weeks pregnant with our second child...a baby girl. At our 20 week sonogram the dr.s found several abnormalities...including cysts on her brain. We decided to have an anmiocentisis which confirmed that our daughter has a chromosomal abnormality called trisomy 18. While it not the same thing as your baby, I certainly can identify the uncertainty and waiting. Things that helped me: I stayed off the internet until we got an actual diagnosis. TOO much information online. I knew I would just spend way too much time, and it probably would just make me worry more. I talked to family and friends, went to a movie with my husband...and enjoyed being home with my 2 year old. She keeps me busy, and smiling, and not as focused on myself and my worries. I prayed, and just put my trust in the Lord that whatever happened/happens is His will. There have been hard days/moments, but amazingly enough we have enjoyed many blessing from this experience. Mostly the kindness of friends and family have been a huge strength. We just take one day at a time, and enjoy the time that we have now with our daughter before she is born, because it's likely that if she is born alive, she won't live long because of all her problems. So, I guess I just want to say...Good luck! Hang in there. Have hope. And know that life is beautiful..even when faced with such challenges. Your baby is special and will bring such joy, no matter what.
-A.

Hi, C..

I have a 2 yr old son and an 8 week old son. AFTER my 8 week old was born... about 6 hours after his birth, we were told that he probably had down syndrome... it was very difficult. One week later, the chromosone test confirmed that he does indeed have down syndrome. He is adorable baby and I love him immensely. I was shocked to hear that 90% of mothers who take the prenatal testing decide to terminate their pregnancies. I know that this is a really difficult and scary time... I just want to share with you that the "disability" of my child vanishes whenever I hold him, see him, etc... each doctor's appt that we have is very upsetting to me because they are focusing on abnormalities or trying to maximize potential, etc... while that is all good data... I just want to accept my little guy for who he is. I prefer to focus on the concept that disabilities are natural and should be welcome in our society. Check out this website:
http://www.disabilityisnatural.com/abouttheauthor.htm
If you need to talk at all, feel free to email me.

Though I can't imagine the many challenges you and your family are going to face with your newborn's physical challenges you have to find the silver lining in every situation. It sounds like you are a loving mother who would do anything to ensure the wellbeing of her children. Whenever I see or hear about families raising children with any sort of challenge or disability it warms my heart to know that God picked you and your family for the job. Thats is very special. Even on those days when you keep yourself so busy so you don't have time to stop and face reality you must remember that we are never given more than we can handle. And you know this having two kids already, that they teach you things you never thought were possible. Like the ability to love someone so deeply and not to sweat the small stuff in life. I suppose my advise is to look at life through you child's and there you will find peace. I hope I was able to ease your mind a little. I will keep your family in my prayers. S.

C., I have no expreience with this, but i will keep you and your family in my thoughts an prayers...especially your little one.

I hope I can offer some help to you on this. I know two people with children that have this diagnosis. Both of them present very different. I think both of them would be happy to talk to you if you give me your e-mail I will pass it on to them. My boss has an older daughter (8 year old) with this diagnosis. I also treat a 3 year old with this diagnosis. I am a pediatric occupational therapist too. Please feel free to contact me if you have any more question!!!

While that all can seem very overwhelming right now, all you can do is wait and pray. Do not waste energy right now until you find out with certainty what you will face. I know it seems easier said than done, but is there any real alternative? What if the doctors are wrong? If they're right, will this news cause you to love this child any less or will it cause you to take some other action? Once you get the news, then empower yourself by researching what this prognosis means and get communication lines going with your husband before your child is born. Grieve together, plan together, and prepare your immediate and extended family together. It's going to take everyone to help bring this child into the family and the more you know ahead of time, the more empowered you'll feel as a parent. And, remember that parenthood is hard work anyway. If this child is indeed going to have special needs, all you can do is research what care he or she will need when he gets here and become his best advocate. Ask your doctor for resources in your community and be a family.

What your baby needs from you right now is to take care of your physical and mental health by relaxing and not thinking excessively about things that might be wrong.

Designate times when you deal with this issue--say, from 3-4pm, I am going to 1) make such-and-such appointment 2) research the answer to the question how reliable is the test.

I don't know anything about this specific condition, but carefully consider the reliability of the test and what the chances are that the test results may actually mean that nothing is wrong. I am sure you are much more informed on the topic than I am, but don't sit around thinking about worst case scenarios. Maybe your child will have special needs and bring special gifts to the world. If there are productive things you can do with the information you are getting right now, go for it. Is there a support group for parents of children with this condition?

Then spend time doing things that care for yourself, like go for a walk on a nice day, eat healthy and delicious food.

Here is a CD that you might be interested in:

http://www.amazon.com/Belly-Love-Meditations-Healthy-Preg...

Hi C., I am sorry to hear about your situation my wife and i are having our first child. I read your message and i just wanted to tell you that you are in our thoughts and prayers.We are here if you need sombody to chat with. Tom&Elissa

as the old saying goes. If God brings you to it, He will get you through it! You baby is a special little one. How blessed you are to give birth to him/her. You have been chosen from all the other mommies out there because God believes you can handle this special situation! Hugging goes a long way. HUG!

Hi C.,

I'm so sorry you are having to go through this difficult time. They also told me something was wrong with my 3rd child & I had to wait a week for the follow up testing-it doesn't sound like long, but I think it was the longest 7 days of my life. Hang in there-keep busy-pray a lot. My daughter turned out to be fine, but even if your little one does have problems, I'm sure he/she will be a blessing to your family. My oldest suffered from epilepsy. It is hard to watch your child endure medical problems, but you will become stronger from it. Lean on God and your friends/family. I will pray for you during this time of waiting.

K.