Norah's hydrocephalus

Norah is my beautiful daughter born with congenital hydrocephalus. We learned that Norah had enlarged lateral ventricles in her brain during an ultrasound when I was 19 weeks pregnant. Normal ventricle size is less that 10mm, at that time the ventricle were 11mm, not a big problem so we thought. Norah had been so active during the ultrasound, we thought maybe the measurement was off. My obstetrician reassured us, but had enough concern to send us on for more in-depth ultrasound to make sure. We meet with a perinatologist at 23 weeks, and that is when our world turned upside down. She diagnosed our baby with ventriculomegaly/hydrocephalus, her ventricles were 14mm that day. We continued to follow up with both my obstetrician and perinatologist, having appointment with one or the other or both every two to three weeks. At 26 weeks, ventricles measured 25mm, and head was two weeks ahead. The next measurements came when I was 30 weeks pregnant, the baby’s ventricles measured 27mm with her head measuring 3 weeks ahead. At 34.5 weeks her ventricles measured 31mm and her head size measured 42weeks gestation.

Jason and I were often given poor outcomes for Norah throughout the rest of my pregnancy from multiple people. Despite telling all our doctors that termination of my pregnancy wasn't an option for us, they still continued to offer it as an option. We agreed that even if we only got to hold our baby girl for just 5 minutes in the end, it was all worth it. Many tears were shed throughout this pregnancy, and constant prayers to God to protect our baby girl and give us a miracle. I must tell you, once I placed my fears in God’s hands I had a constant feeling of peace that every thing would be ok. God was by my side throughout this journey.

Our perinatologist wanted to do an amino at 23 weeks, I declined at that point wanting to wait longer because of the risks associated with it. We discussed our concerns and decided 27 weeks would be when we would do it, but at that point it was decided since all other screenings had come back normal it wouldn't really be anymore helpful at that point. We had pushed for a fetal MRI but never had one. I wish we would have one, but perinatalogist wouldn’t order one until we saw the neurologist and neurosurgeon. The neurosurgeon was great to talk to and gave us the best hope out of everyone we had seen. We saw him around 32 weeks; he said a fetal MRI wasn't going to help him too much at that point, especially since she was so active. He could see the enlarged ventricles on the ultrasound and enlarged head circumference which meant she would most likely need to be shunted right after birth, and that an MRI would be done right after her delivery.

We knew Norah would be arriving by c-section, so at my appointment at 34 weeks, we discussed doing an amniocentesis to check lung maturity at 36 weeks 4 days. We didn’t make it to that appointment. On Sunday I started to develop pain on my lower left side, by Monday morning they were severe. This pain lead to a c-section that day for concern of uterine rupture due to Norah’s head size and a previous c-section.

Norah arrived on July 20th at exactly 36 weeks gestation. She weighed 6 lbs 15oz; her head size was 38cm. A MRI was performed on Tuesday measuring her ventricles at 42cm, and showing aquductal stenosis, the cause of her hydrocephalus. She had a VP shunt placed on July 25th which stayed in for 10 days days before it was removed and an external shunt was place. This was placed because a week after having the shunt place Norah began to leak CSF from the incision. Many attempts were made to seal Norah’s incision to stop the leaking but all failed because the high pressure shunt that was placed wasn't matching the pressure Norah needed. Norah developed several bleeds in her brain while the external shunt was in place, delaying the placement of a new internal shunt. After a week of the external shunt, it was time to put in a new shunt. We were told because all of the blood in her head hadn't absorbed there was a high risk of the new shunt to fail. A new moderate pressure shunt was placed August 11th. Norah has not required any shunt revisions since that time.

In September 2009, Jason and I traveled to Duke University, in North Carolina. There we had the stem cells obtained from Norah's cord blood at delivery infused. VP shunts have been the standard of care for treating hydrocephalus, but through much time spent on the internet researching we learned of other babies being born with hydrocephalus that were having their cord blood infused to help stimulate brain tissue growth. Please check out the fetalhydrocephalus.com for more information. We knew that there weren’t any promises, but we were going to do anything that may help Norah to have the best outcomes.

We returned to Duke in May 2010 for a second infusion. After this infusion we noticed more changes in Norah that let us know her stem cells were working. She was able to sit independently and her language skills took off. We still have some cells left and have debated a third infusion. For now that’s on hold.

Norah current diagnoses include hydrocephalus secondary to aqueductal stenosis, missing septum pellucidum, agenesis corpus collosum and a Chiari malformation. She also has 13 sets of ribs and several birth marks including a port wine stain, hemangiomas, and a stork bite.

Norah walks with a walker and has problems with gross motor skills. She meets with a physical therapist weekly through the Birth to 3 program. She began working with them when she was 6 months old and the help she received became evident with in just a few weeks. She has also had difficult with eating and gaining weight. She has always been very low on the weight charts, never over the 3rd percentile, and currently considered in the 1st percentile. We work with a speech therapist to help with improving her chewing and swallowing skills.


I happy to tell you that Norah has already surpassing what some doctors thought she would be able to do. She loves and is full of life. She gives wonderful sweet smiles that make you beg for more of them. I know every child is different but what I have learned through Norah and the wonderful support group of other parents that have children with hydrocephalus is that these children can thrive despite the doom and gloom of the picture painted for us by some of our doctors while I was pregnant.

If you are looking for more information on hydrocephalus or support from other with children that have hydrocephalus try the following links.

Fetal Hydrocephalus, developed by a mom with a child with hydrocephalus, providing great information from diagnosis, treatment and care all related to hydrocephalus.

Hydrocephalus Association, dedicated to research and education for hydrocephalus
Pediatric Hydrocephalus Foundation, has support for hydrocephalus, raising awareness of this disease and raising money to fund further research for treatment options.

Babycenter, has an online support group communtiy for hydrocephalus