Emily enjoying a little lunch.

I found out that I was pregnant and at my 20 week ultrasound I learned that my baby had an array of problems the largest one being a bladder outlet obstruction which lead to my daughter having no amniotic fluid. I had an amniocentesis (they drained over 1/2 liter of fluid) performed along with many ultrasounds in the span of afew days.

The doctor was negative the entire time, constantly suggesting abortion (what he called 'termination') and telling me of others in my situation that had abortions. I asked him what he would do in my situation, and he said he would terminate. I asked about surgery, and he said the bladder was too large for him to even consider it. I asked about early delivery, and he said that it was a possibility but that if I were to do it doctors would not prepare to help my baby.

One visit he suggested/offered a second opinion.  My new doctor agreed that survival was not likely but offered to do more tests because a surgery was possible with normal chromosomes; more fluid was drawn, however this time there was also a mass of fluid in the abdomen as well.  They decided that another fluid draw would be needed when I went to the appointment they sent my partner and I to a private room. Bad news...it was a girl, and the surgery was not used on females. They explained 'comfort care,' which is how to care for your child if it will only live a few minutes.  

I began to have weekly ultrasounds at 25 weeks, and  we noticed a small amount of fluid. The next week the amount of fluid was normal. The situation was more hopeful, but she had missed time for critical lung development.  Throughout her ultrasounds we were told many things. She had clubbed feet; she was probably retarded (provenwrong by chromosome test); there was fluid around her heart; she wouldn't be able to breathe; her kidneys would fail. 

They were wrong.  She was born 5 weeks early at five pounds.  When I had her, I looked down and heard her cry.  I remember asking myself, "is this supposed to happen?" (I had never seen a baby die).  She was alive!  I tried to watch through her team of doctors.  They even let me hold her for a quick picture. We were in the NICU for three weeks. 

She does have many medical issues, but her lungs are normal. Her kidneys have some issues but should not need replaced. Her feet are not clubbed, she is not mentally retarded, and there is no longer fluid in her abdomen or around her heart.  Her medical problems are mostly related to her large bladder and prune belly syndrome (a lack of abdominal muscles) but are not life threatening. She has had one surgery to help prevent bladder infections  She is eight months old and very happy. She can sit up on her own and roll over.  She is amazing, and I am so glad that I had her. 

I hope this story can help someone. 

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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.