20 Week Ultrasound Indicates That Our Baby Boy Has Hydrocephalus

I do not have personal experience with hydrocephalus, but had a similar experience with my 20 week ultrasound with my youngest (it also pointed to the possibility of Down's or Edward's). She had a choroid plexus cyst (a fluid pocket in the brain), slight calcification on the right ventricle, and her stomach was distended for over 24 hours (we had back-to-back ultrasounds Thursday and Friday). They were concerned about Duodenal Atresia, which is where the stomach and duodenum are not properly connected. I was faced with the possibility that my baby had Down's and would need surgery immediately after birth if she did have the other condition.

Fortunately, for me, my father has been with a laboratory for years and he was able to talk me through everything that I needed to do. I discussed with the doctor what would need to happen before birth, for surgery if necessary, care that would be required. I also turned to the internet and my family and friends. The more people who know what you are going through, the better prepared everyone will be.

My husband and I opted for an amniocentesis and it ruled out any genetic anomalies. Her stomach returned to normal size, and all ultrasounds and fetal ECG returned normal results. I did not have to go through the daunting process of knowing that my daughter would have surgery in 18 weeks (we were cleared at 22 weeks), but I was much better prepared when I armed myself with knowledge.

Drink in as much information as you can, find a support group now and attend meetings, discuss every possibility (within reason) with your doctors. Learn everything you can from the internet, books, etc., and remember that hydrocephalus is no longer an automatic vegetable sentence. Shunts can do amazing things nowadays and your baby has a much better chance of a normal life because of our technology and your desire to make everything better for him.

Best of luck and keep us informed. BTW, our daughter was born a healthy 7 lbs 11 oz at 40 weeks, with all functions completely normal. She is now almost 7, in the first grade and an avid reader with a wonderful imagination.

Hi! I have a daughter who was born with severe congenital hydrocephalus last September....she'll be 1 year old on the 24th. She is my 3rd daughter and has been the biggest blessing in my life. She has brought joy beyond measure.

She was shunted at 1 day old and has had no complications with her shunt. We also took her back east to Duke University when she was 6 weeks old to receive an infusion of her cord blood stem cells. She was the 3rd baby with hydrocephalus ever to receive cord blood therapy, but since then there have been 4 or 5 more hydrocephalus babies that have gone to Duke...and I have gotten to know all the other moms pretty well through the internet.

The hope is that the stem cells, which are the bodies 'master cells' will repair brain tissue that was damaged due to the hydrocephalus. Stem cells have the unique ability to turn into whatever kind of cell that the body is needing. And because it was my daughters own stem cells, there was no risk to her.

I would love for you to read my blog. I have a list on my sidebar of all of Elisabeth's (my daughter) different conditions. Most all of them stem from the original problem...the hydrocephalus. There is also a link there that gives more information about the stem cell infusion. There are also many posts in my blog archive that are about Elisabeth and her health care.

The blog address is donaldandlisasorensonfamily.blogspot.com

I also have my email address listed there. Please feel free to contact me with ANY questions. I remember being in your shoes and I was so grateful for the people who shared their experiences and knowledge with me. I would be glad to help in any way I can.

But most importantly, know that this baby will be such a blessing. And that is all that really matters. Each life is precious, and your sweet little baby boy will be the love of your life.

Take care, enjoy the pregnancy, and try not to worry too much. Everything will be OK.

Warmly,
L. Sorenson
Kennewick, WA

B.-

Finding out there is something abnormal is so scary. We had a scare at our first ultrsound, there was a mass in our sons abdomon, and they didn't know what it was, after much worry and many ultrasounds later everything is okay. Just try to stay positive and be thankful we have the technology to find these things out early. I also did visualizations of the mass disappearing every night (sounds crazy) and after 6 weeks the mass had collapsed, so I am convinced that staying positive works. Good Luck-

L.

B.,
I agree with KM medical technology is pretty advanced these days. So, be optimistic and have faith and enjoy your new little blessing challenges and all. You'll be in my prayers.
H. T.

Hi, I don't have any experience w/ hydrocephalus, but I wanted to say I admire your courage in this situation. I am also 29 and expecting our first baby in the next few weeks. We chose not to have any testing for birth defects done, even though I was tempted to. I just finally decided any problems my daughter is born with would never change the fact that we're meant to be her parents and she's meant to be our child. It's easier to say--I can imagine how hard it is to stick to these beliefs when actually facing the challenge of a baby with hydrocephalus or any medical condition. I have faith your baby will be in the best hands with you no matter what happens. I am not religious, but you and your little boy will be in my thoughts.
sending positive energy,
J.

A friend of mine's first son had this - he had 3 or 4 brain surgeries before the shunt took - over lots of year. The first few I think grew over. They didn't know before his birth and they figured it out at his six week appointment.

Long story short he is a very happy - smart - active 8 year old.

My son was born with Spina Bifida and developed hydrocephalus after he was born. There was no indication of it in the womb. Anyway, he had a shunt put in at 2weeks old and everything was fine until 2 weeks later, it malfunctioned. He had about 4 shunt revisions before it finally took and all this happened by the time he was 3 months old. After that he was fine and hasn't had any problems and now he is 16 years old. The Dr's say he may have to have a shunt revision when he is a teenager but everything has been fine and he leads a really normal life. I have learned since that a lot of times when you put a foreign object into your body, especially at a young age, it may take a few tries before it takes. I know it seems scary but shunts aren't unusual surgery for neuorsurgeons so i'm sure your Dr. will do a good job and your son will be just fine. Just be prepared and know it's not unusual for the shunt revisions. Good luck to you and remain positive.

We went through a rough time with our son now 17 months old when at his 4 month appointment they notice that his head growth was very rapid he went from the 15% for head circumference to the 100% in a matter of weeks and were worried that it would be hydrocephalus and the worry with that is that they didn't ketch it sooner as the longer it goes without diagnosis the more damage that can be done. Long story short I did my share of research plus about enough research for 40 people I was so worried/scared. The more I researched the more I felt like it wasn't quit so bad if it were to be the case. Turns out he had fluid buildup but it was not in the center of his brain (Hydrocephalus) the buildup was between the brain and the front of his skull. The fluid had dissipated a little but some is still there and they are keeping an eye on it. But for over two months while they did his CT scans and MRI's we had a rough time the hardest part for was is that we didn't ketch it sooner and we felt like we were the ones to be blamed.

I guess what I am trying to get out is that you are not alone and you are very blessed for them to have noticed the problem this early so that if it is hydrocephalus (which it still may not be [we had a couple scares with my daughter while pregnant because they kept finding problems and she turned out to be a very healthy problem free child at birth]) they are able to act soon after birth. And remember he will most likely lead a perfectly healthy happy life shunts work amazingly well! Try not to stress to much that this is a very, very treatable health problem. We will be praying for your little one! All the best and congratulations on your new addition!

Thank you so much for continuing the pregnancy, my sister aborted her baby because of a situation like this. My thoughts and prayers will be with you and the baby during this time!! It is such a blessing to have a baby, do not lose sight of that because of the situation God can and will provide.

please let keep me update. will keep you in my prayers

Hi B....
My neighbor's son was born with hydrocephalus. He had a shunt inserted at about 1 year old. He was not diagnosed with the condition at birth, it was discovered when it seemed his head was growing at too fast a rate. I'm sure you are very stressed about this diagnosis, but I can tell you from my personal observation, that you are lucky it's been diagnosed in the womb, so that you can immediately get the shunt. The delay for my friend's son resulted in delayed sitting up, crawling, walking and running, along with balance problems. So my guess is that you'll avoid these problems with early intervention. To give you comfort, he is otherwise developmentally normal, and is on track with his "mental" development. I know from my friend that there are hydrocephalus support groups, so you might look online to find a local one. Best wishes and positive thoughts...

I don't know anything about your baby's condition, but i just know how much doctors and other healthcare staff can terrify parents unneccesarily. I'm so glad your doctor was optimistic. You asked for prayer and you have it. Bless you and your little one. Be at peace and have faith above all. If it comes between believing God's voice and believing your fear or the fear of the health care staff, you know whom to believe.

This is difficult for me too. I wrote you before about a friend that had a scare (same as you now have), then a second opinion that was wrong (said everything was fine so they were not prepared for what was to come), then a very poor outcome.

Their baby had the same indications. They showed up at my house terrified and both in tears begging to use the internet for research. I can tell you this:

Be very confident with the idea of a shunt. Common practice, and often very normal lives with little or no maintenance. Get a second opinion from an expert if you can. My friends went to Portland. That being said, once you start doing even a little research, you will find a great deal of helpful information.

www.hydroassoc.org

Start there.

My thoughts are with you.

The baby and friends I refer to...The baby ended up with the most severe case after they were told she was fine. Unfortunately her heart was also not up to the life task. So I am happy to hear that everything else checks out with your baby. A huge congratulations on your new family member-to-be. Keep checking in with doctors...and us!

Oh B. I feel for you.
All I can say is review the serenity prayer and try and focus on what you can change and try and make peace with what you can't. Just concentrate on having a healthy pregnancy and eating right and don't focus on the possible outcomes. If you take good care of you the baby will have a better chance. I am inspired to read that some kids have come out just fine after receiving worrisome ultrasound results. I hope that it all turns out fine but until then it sounds like your doctor is prepared for the worst IF it happens. I will be thinking good thoughts and praying for a good outcome to your pregnancy.

I knew of a baby girl that was born with this. She had her shunt surgery and as of this day, she is a 17 year old, with a very normal life. Try not to worry so much that you can't enjoy your first born experience.