Whether your baby is diagnosed in utero or after birth, the diagnosis of hydrocephalus comes as a shock to any parent.
A sad fact is that Intraventricular Hemorrhage (IVH) is the leading cause of hydrocephalus in preterm infants and varying levels of IVH are very common in preemies, especially extremely preterm babies. Unfortunately, just as there is very little we can do to stop preterm labour, there is even less we can do to avoid an IVH in a preemie baby. Obstetricians and neonatologists know steps they can take to reduce the risk, but truly what happens next is pretty much beyond their control.
If anything, the diagnosis of hydrocephalus makes us better prepared to handle the unexpected, future wrenches in our plans. If we can get through the scares of hydrocephalus, perhaps it makes us parents more resilient and mentally prepared to fight for our babies and help our children grow into capable, strong individuals.
As a parent finding out your baby has hydrocephalus can feel like a blur – you know that initial blur you felt when you arrived in a NICU? It’s pretty much the same, but this time you are learning yet another new word. You’re being told about a health condition you probably didn’t know existed, and the language coming out of your baby’s doctor’s mouth is more to learn on the fly, looking things up in medical journals and dare I say it? Google.
A parent of a baby newly diagnosed with hydrocephalus can feel isolated. Most friends and family will have never heard of this condition. Everyone will have a lot to learn.
I reached out to a group of individuals living with hydrocephalus at various stages of life. I asked them, if you could share a tip with a parent who has a child with hydrocephalus, what would it be?
Build a support network
One person, a preemie, now aged 50, indicated her family had a lack of support. While more babies are surviving and thriving with hydrocephalus not enough has been done to raise awareness about this lifelong condition or how to support kids growing up with it. So build a support network early on. Help your closest family and friends understand hydrocephalus, share information sheets with them, show them photos, ensure they know the signs and symptoms of hydrocephalus and/or a shunt malfunction, and have them ask you questions. Knowledge is power. The more people looking out for your child’s health and wellness the better.
Treat your child as you treat their siblings or other kids
Yes, your child may have a bit of an unusual situation in comparison to siblings or peers, but don’t forget your child wants to be treated just like every other kid. Sometimes we have to let them try new things and test their limits, even if it scares us as parents. Several years ago, when my twins were young, I met a man in his thirties, who had been born at 27 weeks (same as my babies) and acquired hydrocephalus. He told me it is important to let my child try new things, let him do physical activities (within reason) and be the individual that he wants to become. Don’t put him on the sidelines. It’s hard at first. When you first find out your baby has hydrocephalus, you find yourself willing him to get better, to fight through so you can take him home. You feel like you will need to be extra alert and on the watch for any sign of a shunt malfunction. It is your “job” to keep him alive. You have visions of bubble wrapping his tiny, fragile body, to protect him from bumps and bruises.
One day your child will grow up and will be able to take on life and all that comes with it. Give him or her the opportunities to identify their skills and aptitudes early in life, just as you would for any other child.
Teach your child to understand hydrocephalus
In order to support your child with coming into his own, you will also need to start explaining his condition sooner than later. Does your 4 year old need the cold, hard facts and stats? No. My husband and I started by explaining the condition in simple terms to our son. We have explained to him that when he was born very early, he had a “very big headache” and go on to explain his shunt and reservoir helped “fix” the headache, which the smart doctors did for him. Pretty simple, not too scary, not too many questions asked, and no tears shed.
As our son matures we will introduce more specific language, show him images of his shunt placement and answer more detailed questions. He will need to be prepared to answer questions should we, his parents, not be present, especially if an emergency should arise.
Support others who support your child
Based on over six years of experience with hydrocephalus I can tell you this tip is very important and probably overlooked sometimes. We cannot expect others to support and understand our child’s needs if we have not taken the time to support them in learning about hydrocephalus. For example, the majority of my child’s teachers will not have heard of hydrocephalus before they have him in their class for the year.
We can’t expect our children’s teachers to know the ins and outs of every condition a child may have. I think sometimes an enormous level of expectation is put on teachers. There is no possible way every medical condition can be taught during teacher’s college or professional development days. It is our job to introduce our children, provide a verbal description of their condition, signs and symptoms of a problem, and even provide helpful literature for their teachers to review. I like to have copies of this handout from Hydrocephalus Association to provide to our teachers. This handout about Hydrocephalus and Sport, by Spina Bifida Hydrocephalus Ireland, does a great job describing to parents and teachers how children with hydrocephalus can try many sports, and outlines tips and some precautions for children with hydrocephalus during sports, play, recess and class time.
When you are meeting a teacher for the first time, or perhaps a new coach or babysitter, consider providing them copies of these two documents to help them understand hydrocephalus.
When my son was diagnosed in the neonatal intensive care unit, I felt like all my hopes and dreams had been dashed. I didn’t expect him to play baseball or learn to skate. I had no idea what we were in for, but over time, we discovered he just needed to be given the opportunities to figure out things for himself, just like any other child.
September is Hydrocephalus Awareness Month! Do you have a great tip or inspiring story to share? We’d love to read them in the comments section below!
Im a first time mum that gave birth to a premature baby boy born in November 2018,he was born with no complications and 2weeks ago I realised his head was growing when the doctors did a CT scan they found out that he has chronic hydrocephalus I’m scared of what will happen I have no idea how everything will turn out
Hi there, just read your comment and thought I’d reach out. My son was diagnosed with hydrocephalus when I was 27 weeks pregnant. Doctors said it was too late to treat it in utero so we had to wait until he was born to treat it. He was born on 1/7/2019 and had his shunt inserted two days later. He is doing really well so far. His head has reduced in size tremendously and he is eating, cooing, smiling and is overall a beautiful baby. Once your lo has the surgery done I am sure he will thrive and do just fine! Congratulations on your beautiful bundle of joy!
Cerrone, did you end up delivering early? I was diagnosed with aqueductal stenosis on Friday. I’m 33 weeks this week. Waiting for a fetal mri. I’m scared of what’s ahead and I’m online looking for stories, strength and answers. God bless your son.
Hi Dina, no I didn’t deliver early although they told me that I was at risk for pre-term labour. I ended up delivering at 39 weeks and 1 day. I remember doing the feotal MRI…was sooo nervous. But all will be well luv. All will soon be well. Praying for you!
Hello, my name is Tiffany my daughter was born in November 2018 with hydrocephalus and had a VP shunt placed after birth she is 8mths now and still gaining neck control my question is to the parents how old were your child before they were able to hold their head up without help although I know every child is different??
Hello my name is ayesha, I am 22 weeks pregnant and have been told by my doctors that my baby has severe hydrocephalus, his spine is not deformed at the minute and hopefully doesn’t become deformed but I’d love to know how you’ve been dealing with the news you have been told as I don’t have a clue how to think or feel about this situation. This is my first child and I’m finding it all so frightening, my email is ayeshapercivalkhan@gmail.com if you could email me a reply x
Lisa,
My daughter, Katelyn, was born with hydrocephalus In 1999.
She is now 19 and a sophomore in college.
I am the Mom of a 19 year old daughter, Katelyn.
She was diagnosed at 4 months in utero, was shunted at 3 weeks old
With a VP shunt for aqueduct stenosis.
Kate is doing well. She is now a sophomore in college. Works as a campus tour guide during the school year and over the summer.
Kate has never been as easy as my older daughter, Emily. There are the yearly specialist visits to Neurosurgery and there were a few ER visits over the years. But new parents learn to spot when the shunt is not working well. Sometimes this takes time. That can be frustrating and a bit scary, too. But you will make it through. So will your child.
My advice for new moms is Look for signs of headache in babies after their soft spot closes over, that may indicate a shunt Problem.
For Kate, as an infant starting at 11 months, she would bang her little head up against the crib padding to fall asleep. People will tell you that is normal. Mmh? No. That was an early indicator Kate’s shunt was partially blocked.
Ask your Neuro about a partial shunt blockage and what to watch for.
They may not tell you otherwise.
For Kate, all her life, she would usually present with shunt problems, upon waking up, vomiting every half hour and a forehead headache. As a child gets older, they can tell you they have a headache.
Babies can’t.
So watch for any vomiting, or what may look like excessive spitting up of drool. Some will tell you babies do That when they Teethe. Mmh? Not like That!
In an infant vomiting may also be misdiagnosed, if you call Pediatrics, as the flu. They may repeatedly tell you, the flu is going around, call us IF your baby is still vomiting in 24 hours. Mmh? No again.
Hang up and call Neuro. It is likely a partial shunt failure if baby is vomiting or spitting up what looks like drool, for a day. And then it stops. She seems better, and then a month or two later, it’s Back!
I wish someone had told me That One Thing when I brought Kate home. Even Neuro seemed surprised and admitted they had Missed the Partial Blockages that Preceded to the Full Shunt Blockage months later. It took the hospital 8 months to out those puzzle pieces together. So my Kate had headaches due to partial shunt blockages for 8 months, intermittently.
As Kate got older, she presented to us with shunt Issues, when she first woke in the AM with a forehead headache and intermittent vomiting, about a half hour apart. That came to mean a trip to the Neuro at the ER for a Ct head scan and possibly a revision. Go earlier in the day. Daytime ERs are better staffed.
The catheter was usually blocked by soft tissue or protein crystals that occur naturally in the CSF. Overtime those crystals tend to get less and less. The Neurosurgeon would replace the catheter and she would go home the very next day.
Kate had 8 revisions growing up. One Full Shunt replacement when programmables first came on the market. Some kids have fewer, Some never even need a revision.
Three years ago Kate qualified and had an ETV at Boston Children’s Hospital. She is now shunt Free.
I wish the Neuros and ER teams would give all new parents all the ins and outs of Hydrocephalus. You as parents are A Critical Team Member. You see your baby 24/7. Her Whole life. You Know What is Normal. Your input is key to Drs making informed decisions when your child seems off to you. So keep a log. A Daily One. And especially a Log when baby starts to get sick. Time she last vomited. Temp readings, etc. Bring those logs with you to the ER or Neuro visits.
Take videos of baby happy and feeling well, so Drs have visual proof…otherwise Drs in the ER, which are usually Not your Baby’s Neurosurgeon, can see
What is Normal for Your baby and why you brought her to the ER.
I learned to relax after becoming familiar with my baby’s warning signs over time. But it’s tough for new parents.
Reach out to NICU for Hydro Groups in the area or they may even have NICU reunions once a year. Other families with babies and children with Hydro will share insights. Learn from the Moms ahead of you. Because Drs only can tell you about some of the signs and procedures. They can’t help you with a lot of the in between questions. Moms can.
As Kids grow up, kids like Kate are On Blogs and can be an excellent resource into understanding what it’s like growing up with Hydro. How they feel about it. Blogs can be found under The Hydrocephalus Association website.
Read all you can find on the subject of Hydrocephalus and get a good handle on the Brain’s Structure so you can have important discussions with your Neuro team. The Drs appreciate that. Keeping a binder helps keep all that info in one place so you can refer to it from time to time.
Hope this helps,
Patti
I also have a baby with this issue of Hydrocephalus. She was born on the 7th of may 2019 ans was diagnosed to this when i was 7 months pregnant. But now she has been inserted the VP Shunt. Hoping to take good care of her after her being discharged.
I remember years ago bringing my daughter Katelyn home
After she was born. She spent 10 days in the NICU. She was shunted later, at 3 weeks. Kate was diagnosed at 4 months in utero.
Kate is now a sophomore in college. She is doing well.