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Rachel's story

craigsmith13's picture

My wife and I had been trying for years to have a baby. After six years, three rounds of IVF, and multiple miscarriages we finally gave up and figured that it was something that wasn't going to happen for us as we were both entering our 40's. Well four years later we became pregnant with a little girl. After the amnio we learned that she was a 47,xxx; which means that she has an extra "X" chromosome. But that is story for a different forum.

Because my wife was "old" and high risk her wonderful OB/Gyn requested ultrasounds every four weeks throughout her pregnancy. I say wonderful because if she hadn't done so our baby would never have had the chance to survive. After 30 weeks everything was looking good; and then came the news. We arrived at the hospital for the ultrasound at 34 weeks. We knew something was wrong because the tech was very quiet. We confirmed our suspicions when the doctor came in and actually took control of the exam. After he was done he said the news was bad, very bad.

We met him in his office where he explained that our little girl had hydrops - fluid around both lungs and abdomen - and that she would probably be still born. He then asked if we wanted to continue with the pregnancy. We are still shocked about that to this day. After saying "yes" we were whisked away to a private room and given a box of kleenex. We were still in too much shock to realize how bad the situation was so neither of us cried. We figured it was just one more bump on our quest to have a child. How naive we were.

We were moved to another hospital because the one where we were didn't have an ICU capable of handling a hydrops baby. Lucky for us we live in a large city where multiple hospitals were available. They immediately gave my wife a steroid shot to promote lung growth in the fetus as her lungs were being prevented from developing. This went on for two long days. During this time I was dumb enough to do some web searching on hydrops. After crying myself to sleep that night, I stopped searching and started praying. To this day my wife still has done little to no research on the topic. She does know that we ended up being so very fortunate.

The next morning our wonderful little girl Rachel was delivered via c-section (they didn't want to put her through the stress of vaginal delivery). I was actually able to touch her before she was taken off to the NICU where she spent the next 15 days. I couldn't believe it but this tiny little being knew enough to grab daddy's finger when I stroked her hand - I know it's a reflex action but I'm sticking to my story. She had the fluid removed from both lungs but the fluid around her abdomen was taken care of by her body - basically she was pissing like a race horse. It took three more drainages of her right lung before the fluid stopped coming back. She was drained every other day. After which she was slowly taken off her support machines. After one week in the ICU we were finally able to hold our little miracle; we took her home five days later.

After running many tests on my wife and baby they determined that the hydrops was caused by the parvo virus. Evidently most people get it as a child and then never have to worry about it again. It's also referred to as slap cheek. My wife must have never gotten it, and then was exposed to it while pregnant. We'll never know where she got it but she suspects at work because in adults parvo presents as the flu, and the idiots she works with constantly come to the office ill. She actually needed to inform all pregnant women she worked with so they could be tested as well. Thankfully no one else was affected.

Little Rachel was born six weeks early. She came in at 4 pounds 14 ounces, and was 17" long. She is almost six months old now and she's up to 13 pounds and 25" long. She's doing great!!! No complications of hydrops at all. She has some low muscle tone issues but that is because of the extra X chromosome. Nothing that she can't overcome as this little girl is one determined fighter.

I'll close with a statement of hope. When we were given the hydrops diagnosis we were told that her odds were slim to none. We were lucky enough to have amazing doctors working with an amazing little girl. I'm so happy that she was able to prove them all wrong. She is our first child and I can't be more proud or happy to be her father. I hope what I have written will help you in this very stressful time.

jackieb's picture
Member since:
24 September 2010
Last activity:
1 year 19 weeks

Hi, my name is Jackie and I'm 23 years old. I was born with hydrops in 1987, and the doctors told my mother that I would either die or be severely retarded. The hospital to which my mom was sent had only had three other hydrops cases, two who died and one who was born severely retarded. There had been a tear in the umbilical cord as well as the placenta, so I had lost 75% of my blood in the womb. I weighed a little over three pounds. Although the doctors had little hope that I would survive, my mom and all of the my family did. She stayed at the hospital every day with me. Although I had some developmental delays, she never treated me as different growing up. I'm proud to say that I graduated as salutatorian of my class and am now working on my Bachelor's Degree in Education, with a grade point average of 3.97. So, I want you to know that this condition will not define the rest of your daughter's life. She will still be as amazing, and successful, as a any other grown woman can be.

Jackie B

ronapagdilao's picture
Member since:
29 August 2011
Last activity:
21 weeks 6 days

@craigsmith13: doctors in your place are very good. Me when my baby was diagnosed having hydrops they told me that "hydrops is not compatible to life". From your story, i then conclude that some of the doctors in our place are wrong. thanks i was inspired.