Hello,

I hesitated writing on this site because I do not want to discourage anyone who is currently in a situation where their baby has been diagnosed with hydrops. I do believe there is hope and that the power or prayer is incredible. Whatever you do.... do not give up!
Sadly, my daughter Grace did not survive hydrops. I am simply hoping that my story may be helpful to someone else in a similar situation. Whether your baby is fighting for life, or you have just experienced this tragic loss, please know that my heart is with you. If I can pray for you or answer any questions, I encourage you to write me.
Grace was delivered by c-section on January 15th, 2010. I was 26 weeks pregnant. I did not know that Grace had hydrops until the day she was delivered. I ended up at the hospital the night before because I noticed her movement had decreased. Once her illness was discovered, we were given the choice to either continue with the pregnancy (do nothing) and expect a still-born baby within 48 hours, or deliver her with a less than 2% chance of making it out of the delivery room. We chose to deliver her. Grace was born at 5:37pm. They immediately had to resuscitate her, intubate her and insert chest tubes in her body in order to drain the fluid (hydrops) that was building in her body. She did make it out of the delivery room and fought for her life for 9 full days!
Losing Grace was positively the most horrifying experience of my entire life. My husband and I have had an extremely difficult time accepting that our little girl is gone. It has been a grueling 4 months. When Grace died, we chose to have an autopsy performed in hopes of giving doctors more answers and a better understanding of the disease. It was a very difficult decision to make but my hope was for the parents out there that would be sitting in our very situation, desperately searching for answers. As you know, there is not a lot of information out there about this disease.
Here is what we found out about hydrops and how it affected our daughter. Grace was diagnosed with non-immune hydrops fetalis. (non-immune - so blood compatibility was not the issue). We learned, in general, hydrops is caused/associated with something else. It is a secondary condition so something else actually causes it. In Grace's case, she was also diagnosed with Trisomy 21 (downs syndrome). Hydrops was a result of her primary "condition"...downs syndrome. We did not even know she had downs until 2 days after she died. We learned that 34% of the time, babies with Trisomy 21 also have hydrops.
My husband and I had an appointment this past week to go over her autopsy results. The pathologist thoroughly explained her cause of death (respiratory distress---caused from Fetal Hydrops) and gave us a printout with these interesting statistics. Here is what is reads:

Major Causes and Associations of Hydrops Fetalis in 1644 reported cases:

Percentage Cause
22% Cardiovascular
13% Chromosomal
10% Thoracic
8% Anemia
7% Cystic hygroma
6% Monochorionic twinning
5% Fetal Infection
2% Ascites/peritonitis
2% Urinary tract malformation
1% Fetal hypomobility
0.6 Hepatic pathology
0.4 Genetic metabolic disease
0.0 Nephrosis
2% Misc
20% Non determined

Chromosomal Abnormalities in Hydrops:

42% 45, X
34% Trisomy 21
9% Trisomy 18
5% Triploidy
10% Other

Please note that I am not a medical professional, I just wanted to share the information I have been given. It is from "Potter's pathology of the fetus, infant and child", should you want to search deeper into it.
It is my understanding that hydrops affects 0.4% out of 10,000 babies. Such a small number and therefore the information about it is just not as easy to find. If I can be encouraging, both the neonatologist and pathologist told me that the chance of having another child with hydrops was nearly impossible. I know how frightened we are to think of having another child and exposing her/him to this disease. This is where our faith steps in.
I hope this information will be helpful to someone reading this. Please, do not hesitate to write me if you have any other questions about our experience. It would be my pleasure to help in any way possible.

God Bless you!

~ Mara
Email: heyitsmara@hotmail.com