Friday, April 9, 2010

Our baby's story

On April 3, 2010, we went for an 18 week ultrasound for our baby. We were really looking forward to seeing the gender but unfortunately, the technician was unable to find it. We were able to get a couple of pictures of the baby.

On Monday April 6th I received a telephone call from my doctor's office saying that the baby had fluid in the abdomen and they wanted us to go to the University of Chicago for further ultrasound. I got off of the telephone and started bawling. I called Tim and was so upset. Later I received another telephone call from the doctor's office encouraging us to get an amniocentesis of the baby. We decided that we did not want to have the amnio unless there was something medically that they could do for the baby in utero. Later they called during the day saying the appointment was set for Thursday at 9 am.

We went to the University of Chicago on Thursday morning and were able to see Jeff and Lisa before they went in for their ultrasound. We were called in to Room 3 for the ultrasound. The ultrasound took about an hour and the baby seemed to have a good strong heartbeat of 161. We went to the waiting room for a couple of minutes and then were called back by the geneticist.

The first thing she asked us was what we had been told. We told her that the baby had fluid in the abdomen. She said that they were concerned about fluid in the abdomen and in the neck and these were both confirmed. She also said that the baby had a condition that they were very worried about which was called cystic hygroma which is a large pocket of fluid behind the neck. This condition gives the baby only a 10% chance of having a "normal" outcome.

Then she told us that the even more concerning condition was the hydrops. The hydrops is basically fluid that is everywhere in the body including the lungs, abdomen and underneath the skin. She said that this condition has a 100% mortality rate and that there was no hope.
We were obviously completely stunned (we had done a little research and had read some bad things so we were a little prepared but we were trying to hold out some hope). We really did not know where to go with the conversation. She offered the option to terminate the pregnancy but this was something that we did not want to do. She explained that the baby would most likely die in utero but it could happen any time between today and our due date of September 1st.
She expressed her condolences and we went back to the waiting room. The brevity of the situation really did not hit us until we began to make the telephone calls and that is when I began to sob. It was sooooooooooo hard to think about this life that we had waited soo long for and prayed for sooo hard was now not going to be a part of our lives.

We ended up going to meet with Dr. S. to talk with her. She said that she would continue to follow us and that we would give birth in our area. She said that there was a "possibility" that you would be alive "for a little bit". She said that I would start to be seen every two weeks.

It feels like as I am writing this that this is all a bad dream. We know that God has a purpose for your life and we love you more than you will ever know. We know too that if God wanted to heal you that He could. We also know that we don't want you to suffer and the doctors assure us that you are not suffering in utero. We were so looking forward to you being in our lives forever.

1 comment:

  1. I'm so sorry for the diagnosis you received for your precious baby. It's hard to be told your baby won't live.