Wednesday, October 13, 2010

I did the best with the information I had at the time.

I should have noticed the signs. But how would I have known? This was the furthest I had ever been along in a pregnancy. I did see my OB/GYN and complained of all the symptoms a week prior to the diagnosis: rapid weight gain, despite morning sickness all day long, heavy lower abdomen, frequent urination, and a pain on my side that just didn’t feel right. The terrifying thought that you did something wrong, that you caused this because of your actions or inactions, runs through the mind of every woman who has suffered a miscarriage, a pregnancy loss, or a stillborn. I did the best with the information I had at the time. I loved (love) my children and did everything within my power to save their lives. That’s what O. tells me and I believe her.
May 4, 2010 – 17 weeks pregnant

The perinatologist tells us that he is transferring me to another doctor. One who is at the practice more often than he is. He’s only part-time, he reports to us. Sort of semi-retired. In the meantime, I’m informed I should continue to work. I should go home and do some research, and return to see the new doctor next week.  My husband asks, “So there’s a chance we’ll come back next week and…and there will be no heartbeats?” 

"Oh yes," he replies in a matter-of-fact voice.

The online search for TTTS reveals a dismal picture. All of the experts strongly recommend you go on immediate bedrest, drink protein drinks, and inquire as to whether or not you are a candidate for a laser surgery to correct the disease. The semi-retired doc casually mentioned something about a surgery. I latch onto the success stories that are highlighted on all of the websites. I put myself on strict bedrest and medical leave from work.  I will do all I need to do to save my boys.

The following morning my feelings of despair morph into anger. I am livid that I am not being seen by a doctor for another week! I assert myself, and put the lives of my boys first as I bully my way into an emergency appointment with the new doctor that day.

Dr. S. is compassionate and direct. A difficult combination to achieve, but he does so gracefully. I feel at ease with him. He is my advocate. More importantly, he is my boys’ advocate. He is optimistic that I am a candidate for the laser surgery, and will send along my files to the specialist in San Francisco. He gives me hope that I will be that person that beats the odds, that I am a survivor not a victim of TTTS.

May 11, 2010 – 18 weeks 3 days pregnant

Almost a week has passed since the diagnosis when I trek to the suburbs for a follow-up appointment. Dr. S. is monitoring the amniotic fluid in the twins’ sacs. The fluid must increase in Baby A’s sac in order for the laser surgery to take place. It was last 7 mm and it needs to be at 8. Only 1 mm. Such a minute amount, but so large in terms of the difference between a life-saving operation and not.
Ultrasounds are meant to bring pleasure, not the anguish that invades my soul as Dr. S. turns on the monitor and glides the wand across my belly. Baby A lies still. No kicking, no heartbeat. Tears well up in his eyes. “I’m so sorry,” he says. “I never imagined this was what was going to happen.”

My mind immediately jumps to the question, "What did I do wrong?" Dr. S. hears my inner thoughts. "You didn't do anything wrong. This is rare, and completely arbitrary. No rhyme or reason." 

I did the best I could with the information I had at the time. That's what O. tells me. I say I believe her. But I can't help but wonder, what if?


  1. Jill, I have tried to write comments on your blog but I have not been successful. You are an amazing woman and I hope you realize how much you are helping others as you share your experience. The strength and courage you have in sharing you...r heartbreaking story is inspiring. Losing a child before they are born is a terrible loss to suffer. It has been my feeling for a long time that women who go through miscarriage should be offered support instead of being told that it is natures way, and that it happens all the time. I am so proud of you for having the courage to share your thoughts and feelings....I am faithfully following you on your journey and I pray for your happy ending! Love Pam xoxox

  2. Hey, Jill. It's lrachelle80. You are an amazing writer, and your story is so heartbreaking. For want of 1mm...devastating. I'm so, so sorry.