hydrocephalus.

14 03 2008

At 21 weeks pregnant with our second child, we went in (my husband, Joe, my Mom and I) for the gender determination ultrasound. We were so excited to see if we would be bringing home a little brother or little sister for Greta. The ultrasound started…Things were going ok. I was watching the screen and read something that said the baby’s head was measuring 24 weeks. I knew that could be a marker for downs syndrome and started to feel a little nervous. Pretty soon, the ultrasound tech told me to go empty my bladder. When I got back into the room, my OB was there and I knew that something was wrong.  She said there was a “problem”. The baby had hydrocephalus, or “fluid on the brain”. I had heard of this from watching millions of birth shows on tv. She told us the same thing all of the dr’s would say- that the baby could be perfectly normal OR have severe mental or physical impairment or anything in between. The baby could also have other defects and might not live after birth.We went immediately to a high risk OB in town to have a level II ultrasound. This was even worse. The Dr. mentioned termination and the ultrasound tech said, “well, do you want to know what it is?” Like we wouldn’t care now. That was the worst day of my life.

Of course we cared. It was our baby and we loved it already no matter what! We decided to name our son Miles, which means soldier. I also decided that God must think I’m an awesome Mommy to give me this little boy. If he thinks I can handle this, I can.

The next months were filled with ultrasounds, a fetal MRI and appointments with the Neurosurgeon, NICU, and lots of prayer.
After hours and hours of research on hydrocephalus. I came to the conclusion that we really wouldn’t know the prognosis of our son until he was at least one and a half years old. We decided not to do an amniocentesis, because we did not want to put our little guy at any further risk.  Even if he did have a chromosomal disorder, it didn’t matter to us. We would love him just the same. The Ultrasounds showed that his little head was getting bigger and bigger. At my 34 week ultrasound his head was measuring 50cm and his ventricles were measuring 45 mm. I don’t know how we made it through those months. Everything was so uncertain and so scary. If only we could know for sure what the outcome would be! The only way we made it through was by the amazing support of our family and church family.  We could feel their prayers EVERY day. That was the only thing that made that time bearable.

 

On January 3rd, 2008 we went in for our scheduled c-section.  I was extremely uncomfortable at this point and could not wait to have my normal body back again! The surgery started at 7:45am and Miles was born at 8:08am. He was 10 lbs 7oz and 21.5 ” long. His head was actually stuck in my ribs and he started crying before they could remove him completely. That was a strange sensation! They briefly showed me my son and whisked him off to the NICU. What a miracle! Other than an encephalocele on the back of his skull, he had no other birth defects. Any time there is the presence of one birth defect, the probability of others jumps dramatically. He had shunt placement surgery the evening he was born and stayed in the NICU for 14 days. He did so well and other than his surgery, never had to be on oxygen. He passed his hearing test at the hospital and as far as we know has no other medical conditions.

Miles is now 2 months old and doing great.  His first big challenge will be to lift his head from the floor. That is the first step for sitting, crawling, and walking. We are working with his physical therapist once a week.  He will have a surgery on the 27th to repair the encephalocele on the back of his skull. It will be so great to not have to worry about hurting that part of his head any more.  He will also have 2 additional surgeries this summer to place a new shunt in the correct position on his head and remove the existing shunt.

He is a lovely little boy and he adores snuggling. We love him so much and could not imagine life with out him.

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5 responses

15 03 2008
Lisa

Wow….if I didn’t know that you had written this, I would have thought I did. It is so very similar to my experience. Everything from the doctors pushing termination, to us opting not to do the amnio because we wanted her and loved her anyways.

Like you, I feel blessed to know that Heavenly Father trusted me enough to send this special little baby to my home. What a great feeling that is.

I am so glad that you posted this. It was great reading about your pregnancy and about Mile’s birth!

1 04 2008
Kristen LeJeune

A hydro mom that I met on myspace told me about you and your son having an encephalocele…I have heard a lot of hydro stories but yours matches my daughters the most!! My 2.5 year old daughter Lily has congenital hydrocephalus and an encephalocele, which was operated on when she was six months. She has overcome a lot! You are the first person that I’ve met that has a child with an encephalocele. I’d love to provide you with any information that you’d need for his upcoming surgery, since Lily has already gone through it. Please email me, I’d love to hear from you. Kristen LeJeune, Ohio

1 04 2008
sherrilee

Kristen-I’d love to chat and hear about your story. Miles had his enechalocele repaired on Thursday and is home and doing great! What is your email address?

12 04 2008
RF

Your story is so touching…and so familiar. I only wish there were more mothers that would put their faith in God and see the preciousness of life. He is such an amazing child. God bless you. I will add your story to my blog!

15 04 2009
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