My daughter, Alice Eva-June Sagan Krivas was born on March 19, 2011 at 33 weeks, and passed away on March 21, 2011.  My husband Peter and I were aware that she had Ebstein’s Anomaly (at 28 weeks) but were given an optimistic diagnosis.  As it is commonly known with Ebstein’s, doctors were unable to give us much information about Alice’s particular condition until she was born.  After a routine followup (at 33 weeks), it was decided that an immediate cesarean would be necessary, as doctors found she had developed hydrops in her abdomen, chest, and heart.  Less than 24 hours later I gave birth to Alice.  She cracked a few cries and the pediatrician was optimistic.  She held tightly onto Peter’s finger as they weighed and measured her, while giving her oxygen.  It was only decided after a few hours that Alice’s condition was very severe.  A kind doctor from the Children’s hospital here in Montreal informed us that she did not have much hope.  We spent all of the next day reading to her and cuddling, though I did not get to hold her until it was decided that nothing more could be done.  We were given the opportunity to hold her and be with here in a more cozy and private environment for the last 6 hours of her life.  As she passed away, we held her in our arms as I sang her softly to sleep.  This was the most difficult thing I’ve ever lived through.  I wouldn’t wish it on anyone.

As we now look back, our minds are questioning all that happened. We wonder if there was anything at all anyone could have done to save her.  We are desperate but know that it is all too late.  It’s so frustrating to have those feelings.

I decided to join this website because I think it is very important to encourage at least one other ultrasound during pregnancy, as here in Canada women only get one, around 12-20 weeks.  If it weren’t for the many ultrasounds we had (for other reasons), this anomaly would not have been found and we would not have had the time with her that we did.  She would have more than likely passed away inside of me.

What a tragedy.

Posted by nathiedionne.
 

3 Comments »

  1. I’m so very sorry for your loss. Your beautiful daughter had two very brave parents and we all admire you to no end. I’m a 36 year-old parent who has Ebstein’s and this website has been immensely helpful to me. I hope it will be to you.

    Comment by Jen — May 15, 2011 @ 5:31 am

  2. I am so heart broken for you two. This is such a hard disease to deal with. I am a 29 year old parent with epsteins and I had intense ultrasounds done of both my childrens hearts when i was pregnant. I was so happy to know that i had ot passed on my disease to my children. I hope this website will help me feel less alone in this disease. It is so sad, you both are so much stronger than i ever could have been. God Bless you in all your Endeavours!

    Amir

    Comment by turbulence215 — August 12, 2011 @ 3:12 pm

  3. I sit here and cry with you. My baby boy also died due to ebsteins, last year. We only realised it after his birth (38.5weeks). After a bumpy 16 days he could hold on any longer. Some say it is better cause he would have spen most of his time in hospital but I would love to be able to see him today.
    Sure isn’t an easy thing to hold your baby while he is dying – not able to do anything for him…
    You are in my thoughts

    Heidi

    Comment by Heidi – RSA — August 26, 2011 @ 10:04 am

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