This page attempts to answer common questions people may have about Hydrops Fetalis. If you have a question, the best place to ask it on this site is in our community forums because real parents who have dealt with / are dealing with Hydrops Fetalis can help you there.

What Is Hydrops Fetalis?

I am not going to repeat the "medical definition" here because it is already written in so many places online (here you can do a search). I am going to describe Hydrops Fetalis in plain English.

Hydrops Fetalis is basically a build up of "fluid" in the babies body. Hydrops Fetalis is not a disease or defect by itself but is the result of one or more other medical problems a baby is facing. Hydrops Fetalis is dangerous because it is basically a process whereby the build up of fluids have a damaging impact on the babies health. The fluids can build up and put pressure on the developing internal organs. This pressure can lead to mal-development and sometimes organ failure before or after birth. By organs we mean the heart, lungs, kidneys, liver etc etc.

What Causes Hydrops Fetalis

As I explained above, Hydrops Fetalis is actually a condition caused by other problems in the body. The kinds of problems that can cause Hydrops can be divided into two - Immune Hydrops and Non-Immune Hydrops. The fist kind, Immune Hydrops is widely agreed to be the most dangerous and life threatening. Immune Hydrops is basically an incompatibility between the mother and the baby whereby the mothers immune system sees the baby as a threat and attacks it. Today this kind of Hydrops, most experts believe, if far less common because tests can be done before conception to check for any possibility genetically of having a conflict that can cause Immune Hydrops. However in reality not many people around the world have tests done before conception and of course in some cases there is no planning at all before conception - so some cases of Immune Hydrops can still occur.

The second class of Hydrops is Non-Immune Hydrops. This is according to many doctors and researchers more common and although very challenging it does show a higher chance of survival than Immune Hydrops. The main disadvantage of discovering that you have Non-Immune Hydrops rather than Immune Hydrops is that you will still need to look for the cause(s). At least with Immune Hydrops you have a pretty clear idea of what the cause is.

The causes of Non-Immune Hydrops can vary so much that some journals / reports written by doctors and scientists have listed 100's of them down. There is a huge list of tests to be done to find the cause for Non-immune Hydrops and sadly, even if you complete a lot of tests and have alot of ultrasound scans, in many cases the cause is still never found. When my son was alive and I was out researching for possible causes to explore I carried about 20 pages of text with me to various doctors, trying to rule them out one by one. That's quite sad but true. Remember its your child not the doctors, so don't be ashamed to keep a checklist and maintain a bit of pressure on the doctors to rule out as many things as possible. I never saw anyone more prepared than myself armed with my printouts and that scared me a bit. Don't give up because as I answer in a question later on this page - Hydrops babies can survive!

If your doctors have not found out the causes of your babys Hydrops then I recommend that you also make a checklist. I swear to this day there were some questions I asked doctors, some tests / checks I asked for, and even the doctors had no idea what I was talking about!

Other Names For Hydrops Fetalis

Hydrops Fetalis is sometimes called Fetal Hydrops or just Hydrops. If a baby has Fetal Hydrops you may hear it being called "Hydropic". To get to grips with the rest of the medical terms you may encounter, I recommend copy & pasting any terms into a wikipedia search to find out the full meanings. One of the first terms I had to understand was "Ascites". I had never heard of it before and could hardly remember how to say it by the time I got home. Wikipedia to the rescue - http://en.wikipedia.org/wiki/Ascites.

How Is Hydrops Fetalis Detected / Diagnosed?

Luckily Hydrops can be "easily" detected on ulrasound scans. Of course "easy" detection still requires a trained eye. Once you are familiar with the scans you will be able to identify build ups of fluid because they show up as a dark mass surrounding internal organs especially in the abdomen.

Above: Example ultrasound scan image of Periacardial Effusion, which is a build up of fluid around the heart.

Above: Example urltrasound scan image of Ascites which is a build up of fluid in the abdomen.

Sometimes, although less commonly some diagnosis of Hydrops are only made during or after birth. This can be done simply by the external appearance of the baby which is often a bit pear shaped and may have "edema", which is a build up of fluid under the skin. There are some such cases discussed on my blog if you browse through the various comments.

A Doctor Has Diagnosed My Baby With Hydrops Fetalis, What Do I do Next?

Believe it? For most people the next step will be to get a second oppinion. Not that you don't trust your doctor (normally) just that with such big news, like anything else in life - you should double check the findings. Double checking with another doctor (or better still - several doctors) will give you peice of mind that you are doing the best you can for your baby. As usual, many hands make light work and naturally the more attentive brains you have digesting your case information the better. One doctor might find something that another missed.

Shock. At this time you will probably be feeling very low in spirits, scared and worried to death abouy your baby. For me personally the best way to get through this time was to bury myself in research. It's one thing having a builder telling you your house is unstable and just nodding your head because you have no idea about the technicalities of construction - but having a doctor tell you that your baby has Fetal Hydrops kind of means you need to go back to school in a big way. The more you know about the possible causes and possible treatments the better - then you can really take part in the descisions that are coming around the corner because you understand what is going on and what all of the medical terms mean.

Can A Baby With Hydrops Fetalis Survive?

Yes! I see this question asked online so many times and the answer is a clear yes. Babies can survive having Hydrops Fetalis. However don't let this give you false hopes. It all depends on the severity of the case and the cause(s) of the Hydrops. One thing you should gain from knowing babies can survive is confidence and spirit and hopefully some positive drive to go for goal. Statistics over Hydrops babies survival are very blurred. Many doctors may have never even seen a case before and some "experienced" doctors may have seen one or two cases. With something this rare the doctors naturally may over estimate the odds and confidence in their own ability. That is one of the reasons this site and forums is here - to show you babies can survive having Fetal Hydrops.

What Can You Do To Help Others Dealing With Hydrops? / How Can People Help You?

This is an important part of this site. Through the forums I hope people can help each other out. Humanity is not doomed yet, there are still good people among us ;)

Weather you have just found out your baby has Hydrops or your baby has already been born and is undergoing treatment or even if you baby has sadly passed away. I hope you can find friends and help in the forums.

Here are some ideas if you need help or want to help others...

• Support & Caring: Emotional support and making friends. Friends are made by the experiences that we share.
• Sharing: Please share your experiences and to be really helpful please share your medical case information. This really helps so much and I wish I had these kind of resources. Medical case information helps because people can compare notes and it makes it easier to know which directions to take and which to avoid. It's also great to compare ultrasound scans to try to gauge severity of the condition. For those parents who read this who have a baby who survived Hydrops I really hope you can share this with other parents who are now facing it.