A Story About a Baby (Part 3)

The words “What’s your husband doing today?” are ominous. My heart jumps out of my chest.  I already know that means bad news but I put on my brave face and prepare myself to listen.  In the end, the news isn’t something I could ever have prepared for.  It’s much worse.  Brave face or no, the tears come uninvited.

My doc begins to point out areas on the baby’s body with words like “thick skin” and “fluid filled cavities”.  Then he drops the word “hydrops”.  I don’t really understand what any of this means.  He says something isn’t working right, baby has a layer of fluid around head, neck and body.  Caught this early, it usually reduces the chances of survival.  From a rank of 1 – 10, with 1 being the best diagnosis, he says baby’s severity is 8 or 9.  My hopes and dreams are dashed.  I just lie there in shock trying to retain as much information as possible while not quite believing that any of this is happening.  In the end, I take away from this that I need to get ready to say goodbye.

Next I have a visit with the genetic counselor.  I feel completely numb by this point, unable to process as I answer question after question about my family’s genetic history and then again about Alex’s family’s genetic history. 

Two vials of blood are drawn for genetic testing and I watch the whole thing, speaking volumes to the numbness I feel.  I set up my next appointment and leave. By this time, dread has set in.  I don’t know how to tell Alex the news and I don’t want to share it. I know his brother will be visiting and that makes my approach even more difficult.

Once Alex notices me walking in the door, he asks me about the ultrasound, at which point I immediately start crying.  After I give him the rundown, Alex is crying with me. There are tearful exchanges as we say goodbye to his brother, followed by more crying.

By this time, the numbness starts to dissipate as other emotions crowd in.  Anger is the first of these.  How could this happen?  This is my first pregnancy.  It’s supposed to be fun and relaxed so that I can treasure this time with my baby.  Now all future pregnancies will be scarred by this one.  The doctor mentioned that because of the severity of the hydrops, termination is an option.  I just want to get this “thing” out of my body so I can have a healthy baby.  The longer it sticks around, the longer I have to wait to get my real baby. 

Alex and I deal with this by crying, watching funny movies, crying, playing games, and crying some more.  I do not want someone to try and give me hope or tell me that things could be okay, because right now, they are certainly not going to be okay.  I have no doubt that by my follow up appointment in one week that there will be no heart beat.  I do not want to be attached.

I finally realize that I need some help, so I look for some support outside of my grieving husband.  I find this in the form of online support boards: “Terminating for Medical Reasons”, “Carrying to Term Despite Fatal Fetal Diagnosis” and one specifically for Hydrops Fetalis.  No decisions have been made, but I want to keep my options open, so I post on all of these boards.  I receive overwhelming support and love from each group. 

My hydrops group tells story after story of their experiences carrying a baby with this dreaded diagnosis.  Some learned it was caused by a chromosomal defect, others a virus, still others are left wondering having found no answers from an autopsy.  Reason after reason is thrown out, and I begin to realize that the causes are as individual as the babies.  Mothers grieve over the loss of their babies, many who passed on shortly after birth, and others whose hearts gave out and stopped beating before they met their mothers. 

And yet, there is story after story of mothers taking home their beautiful babies after weeks or months in the NICU.  Babies who were somehow able to overcome the hydrops and are healthy and strong.  These are the stories that keep me coming back - that keep me posting. 

My heart slowly starts to change.  The hurt and anger melt away, to be replaced by a bit of peace and hope.  As time passes, the hope comes a little more strongly.  I start thinking again of my baby as “my baby” and not as “the thing in my belly”.  I slowly allow myself to be okay being totally and utterly attached.

The ultrasound tech at work agrees to check in on my baby as often as possible.  I want to know that heart is still beating and that this baby is still fighting.  I receive an incredible picture of my baby waving to me as if saying “I love you, Mommy. Don’t you give up!”  My heart softens even more.  I am so in love with this baby and will do anything to see it thrive and overcome hydrops.  I don’t know what is causing it, but I do know that I will fight for my baby, and if that means staying positive, then so be it! 

A week after finding out about the hydrops, I have a second ultrasound by MFM. My baby’s heartbeat is steady.  Its growth is ahead of schedule.  Everything looks great…except that nothing about the fluid has changed.  No fluid in the chest cavity which is good.  However, the fluid on the outside hasn’t changed either, and that’s not so good.  All we can do is wait and see what the future unravels, and continue to hope and pray that this baby is a fighter.

Looking for that silver lining every day isn’t easy, but I do it anyway.  Some days the depression sets in.  Others, I feel a calm peace that tells me everything is going to be okay.  I like the peaceful days better. The saying, “Today I am pregnant” holds new meaning to me.  I celebrate every day that I am still pregnant because I don’t know how many of those days I have left.  I should have 27 weeks, but for all I know, I could only have today.  So, today it shall be.  And I will celebrate today.