Hope for Jude

Today's story is by an amazing mom, Jenn, of the blog Jude: The Diary of a Baby and a Stroke.


I am married to the love of my life, Mike. I have a daughter, Emily, who is ten from a prior marriage, and my son, Jude, who was born in September of 2008.

I was so excited to hear that we were going to have a baby! I thought of names, planned room ideas, and visioned a perfect baby in my arms. My first pregnancy was a breeze, but I worried over everything so with this pregnancy I was determined to be relaxed. I remember telling my husband I was going to "sit back and enjoy my pregnancy". I was in for a shock, because that is not how things went.

I had issues throughout my pregnancy, which was unusual, because my first pregnancy was fine. At three months I had an ovarian cyst rupture, I then developed hydronephrosis of the right kidney, I went into early labor at 31 weeks, etc. The big issue we had was at four months when I had my level two sonogram. I was convinced Jude was a girl, and that’s all we were focused on was finding out the sex. Little did we know we would find out more. We went into the level 2 sonogram, and the doctor was very nice guiding his way around the baby. He announced we were having a boy, and that everything looked great. Then he got very quiet, and I noticed he was scanning the brain….and my heart sank! I knew instantly there was a problem. My husband had lost five babies with his first wife due to ectopic pregnancies, and my mind immediately turned to him. Calmly but concerned I asked, "What is it?". The perinatologist replied, "Your baby's brain ventricles are slightly enlarged, it’s probably nothing at all, but I suggest a fetal MRI to rule out any issues". For some reason I knew at that moment something serious had happened. I scanned through my mind wondering if I had done anything wrong during my pregnancy. A few weeks later we completed the fetal MRI, and we were told that Jude suffered a bilateral brain bleed, or stroke. The doctor explained that she couldn’t tell us what the results would be, but that it didn’t look favorable. We were given the choice to terminate the pregnancy, and we struggled with this. We took the MRI to the neurologists at Cooks Childrens, and the head of radiology at Harris. The doctors were fabulous, and took their time answering any questions we had. This baby had been growing inside of me, and both my husband, and myself were very attached to him. Although, the idea of bringing an incapacitated child into the world seemed like it would be very cruel. The doctors explained that babies suffer strokes a lot in utero because their little vessels are "so friable". But the difference is most babies recover from this issue and Jude did not. The doctor explained that Jude’s brain could still compensate, and that his issues could range from mild dyslexia to profound retardation. We decided we could not terminate a pregnancy based on possible mild dyslexia, and we had to give our baby a chance. Even through the stroke he kept on fighting, so we had to fight for him!! Throughout the rest of the pregnancy the perinatologist was amazed as Jude’s head continued to grow on target, and we got our hopes up!

We gave him the name Jude because he is the patron saint of lost hope. He helps those that have no hope left find their way again. We thought the name was fitting.

During the pregnancy I cried a lot, and I started my blog....




Releasing my emotions in writing seemed to help me deal with this situation head on. My husband was also my rock, and he comforted me when no one else could.

Jude’s birth held great expectations because of the news we had been given. My husband, and my cousin Sarah were both in the room with me. Jude’s birth took about 12 hours, and he had a slight shoulder dystocia when he was born. There was panic in the room due to the shoulder issue, and I remember everyone yelling at me to push as hard as I could. I also remember the doctor yelling, "After everything you have been through this baby is NOT going to have issues from shoulder dystocia", and at that very moment she wiggled him free. We all held our breath waiting for Jude to cry, and then we heard him loud and clear. We all breathed a sigh of relief, and Jude scored a 9.9 on the apgar.



After his birth we took home what we thought was a happy, and healthy baby boy. At three months old Jude suddenly experienced a grand mal seizure. After that he began to have up to 8 seizures a day, and our dreams were crushed.

We went through an emotional roller coaster that never seemed to stop and let us off. We wrestled with our emotions, our lack of sleep due to Jude’s seizures, and constant hospital stays. We felt ripped off, and like we had been cheated, but realized we were given a blessing. Jude has inspired everyone in my family, and has taught my daughter compassion, and empathy. We wouldn’t trade him for the world!




Jude had a bilateral stroke in utero that caused a neuronal migrational disorder which caused bilateral closed lipped schizencephaly. Originally in the hospital we were told Jude had a long list of conditions, and were told he wouldn’t "walk, talk, and wouldn’t live past early childhood". We have since been told otherwise, and have compared the new neurologists findings to the MRI, and concur with the above listed condition. When I was told he wouldn’t live I was furious, and mad at everyone. I then turned my anger into a march specifically for Jude and to make sure that what I was being told was correct. I then found out it wasn’t, and that with treatment Jude could go far. What Jude accomplishes will be up to Jude! No one can tell me that he has an expiration label! I believe in being your child’s healthcare advocate.

We were instructed by a neurologist that Jude needed to be on phenobarbitol, when they didn’t work we tried topamax. When neither of those controlled the seizures we felt at a loss. The seizures became an everyday routine for us, and we knew Jude would never develop properly with them. We then picked a new neurologist who tried vitamin B6 that didn’t work, and then Depakote. The Depakote has been our saving grace!!!

I follow many bloggers that inspire me. Ellen at the Love that Max blog inspired me. I had talked to Liz Logelin in the just mommies forum, and followed her husband's blog when she passed away after giving birth. I figured if he could make it through something so terrible then I can surely make it through this. I still had my loved one, and would put everything I could into Jude’s future.

Jude is seizure free at the moment. He does have Cerebal Palsy that affects his upper torso more than his bottom. My husband had to quit his job, and the medical bills are outrageous, but we are very happy we have our little Jude. He is also smiling, and laughing which he never did while on the pheno! All we wanted was to see our baby Jude laugh......and now we can!



One the phenol Jude was like a little zombie that didn’t react to anything. After being weaned off Jude seems to have surfaced. He smiles at my voice, and loves to be held. He has the funniest little pterodactyl laugh.. You can see that Jude is determined to roll over, and that he really wants to crawl. He gets very frustrated at his limitations, but I believe this will help him prove the doctors wrong.




Our goal is to get Jude to walk someday. We understand he won’t ever be "normal", but who is really? We also put time aside for our family, and friends, and to always take time to listen to each other's emotions.



My advice to other parents is to do whatever research makes you feel better, and make sure you stand up for your child’s rights. The doctors are only doing what they think is best, but remember they are human and can be wrong. I had a hard time accepting help from other people, and someone gave me great advice regarding that. My aunt told me "Jennifer everyone feels helpless, and wants to do something. Let them give to you because it makes their hearts feel better". In addition, once you decide to proceed through the pregnancy, never look back and question anything. Also, never wonder if you did anything wrong, because you didn’t. I had a doctor tell me, "You are not a woman who abused your body with drugs like some women do, you just got the short end of the stick". It was brutal honesty, but that sentence has stayed with me. I have now become an advocate for pediatric stroke awarness, and for the March of Dimes. 1 in 4000 babies will suffer a stroke, that means you have a 6times greater chance of having a baby with stroke than many other childhood issues. They just don’t talk about it because there is little they can do once a stroke happens. Although we cannot avoid a stroke in utero, there is so much we can do to help our children live a stroke free life. Strokes are fast becoming one of the top ten killers in children. Be sure to learn all you can do to avoid this situation. Have your children exercise, eat well balanced healthy meals, and do not smoke around them!

For more information about pediatric strokes or stroke in utero, visit:

I am Pregnant: Babies Forum - Ventriculomegaly or
Pediatric Stroke Network