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CHD diagnosis, to terminate or not...

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  1. #1
    txhumanist
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    CHD diagnosis, to terminate or not...

    Hello -

    I am reaching out because the last few weeks have been a never-ending nightmare for us. This is our story: We struggled for 7 years, multiple IVF cycles and our final embryo finally held to become a beautiful baby boy, healthy and active. He is 18 months now. We resumed our intimacies after almost a year, and we did not think about protection considering that we struggled to get pregnant anyway. To our biggest surprise and delight, we got pregnant 20 weeks back. NIPT tests came back low risk for Downs', Trisomy 21 and a few others. We were so overjoyed that we did not even blink when our high risk fetal medicine doctor mentioned in our 20 weel U/S that he is concerned about the baby's heart and is referring us to a fetal cardiologist for a fetal echocardiogram. Our beautiful dream vanished into a bleak diagnosis. ventricular septal defect, right ventricular hypertory, functional pulmonary atresia with no antegrade flow observed in the pulmonary artery. The cardiologist was stumped by the otherwise normal heart morphology and wanted to repeat the echo when the baby is 26 weeks, since he could not fit one medical condition to the U/S (functional atresia occurs when structural defects are absent/unable to be found). We were hoping that there would be some miracle, and if not we can handle the surgery for fixing the defects.

    However, I have spent the last 2 weeks reading up on any scientific publication related to CHD as well as caregiver responsibility and I am slowly fearing that it may be more that we can handle. There are two aspects to the situation: one, the sheer number of surgeries the LO has to go through post birth seems traumatic. Two, we are an immigrant couple and we have no support system in this country. We have no parents nor siblings to assist us. One could say all we have outside of a few friends scattered across the country is just ourselves. Both of us are in high income labor, and while we can afford medical expenses and caregiver expenses, we are not sure that we can continue our stressful work with a sick child. Moreover, our oldest healthy boy will be 2 years old when the baby would be born, and he would need more attention that we could give him with a sick child in our hands. I can't expect a 2-year old to understand the complexities and I fear he may grow up feeling resentful and aloof.

    Here's the tough part: WA permits post-viability termination of pregnancy. I have been mulling that personally and finally got the courage to discuss with my wife and needless, to say it was emotional. The rational part tells us we cannot sacrifice the well-being of a healthy toddler for the potential of a sick unborn. In a brutally honest way, when I know I am dealt with a bum hand, I would rather fold and stay content with what I have than play my hand and risk losing all. The emotional part kicks in when the little baby kicks the mommy.

    I could spend days lamenting on how much we struggled to establish ourselves, in a country where we know no-one and yet made it our home, the struggles we went through in our personal and professional lives, our journey through IUI and IVF and so on. But what I am hoping from someone, anyone of you, to tell us that you've been in a situation with a young older sibling and how to manage it, without any external support. Because I really am at a loss.

    Sorry for the long post, I wrote this down as a cathartic relief or sorts. I hope you can reply back without being judgmental of our choices.


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  3. #2
    Patient-One
    LET THE JOURNEY CONTINUE!!!
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    Praying for you and your family. Wishing the best possible outcome. I don't have am experience to share sorry.
    ME - 38, DH - 45
    IVF - 01/12, ER - 06 Feb, ET - 09 Feb
    BETA #1 - 80.3 (12dp3dt), #2 - 183.6 (15dp3dt) - b/g twins
    Ruptured Membrane 06/16/12 - Maximus
    Born at 23 weeks 03 July 12 - 23 July 12 - Anaya
    FET - March 2014 - BFN
    IVF 2 - 08/2015, ER - 13 Aug, ET 18 Aug
    BETA #1 - 84 (9dp5dt), #2 - 225 (11dp5dt), #3 - 1303 (15dp5dt) - 4/15/16
    FET2 - around 26 Jun 17


  4. #3
    txhumanist
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    Update

    Quote Originally Posted by Patient-One View Post
    Praying for you and your family. Wishing the best possible outcome. I don't have am experience to share sorry.
    Thanks for the thoughts, I really appreciate it.

    Our baby passed away last week in-utero. The termination was scheduled for this Thursday, since we discovered that she had a rare condition called Ebstein's Anomaly. Less than 400 babies are diagnosed with it in a given year and the mortality rate is usually close to 90%. She would never see, smell, feel or hear us, but our thoughts are forever with what could have been.

    We named her Maya, the Sanskrit word for Illusion.

    Thank for all the thoughts and I hope someday the pain ebbs.


  5. #4
    Patient-One
    LET THE JOURNEY CONTINUE!!!
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    Beautiful name with a significant meaning. I don't know if this is your first loss but you and your wife take the time and mourn for the loss of your daughter. No matter what she was your baby. You have the right to feel however you want. Don't let anyone minimize your grief in any way. Time will heal your pain it will never go away but you will learn to live with your new normal. Stay blessed and strong. Best wishes to you both.
    ME - 38, DH - 45
    IVF - 01/12, ER - 06 Feb, ET - 09 Feb
    BETA #1 - 80.3 (12dp3dt), #2 - 183.6 (15dp3dt) - b/g twins
    Ruptured Membrane 06/16/12 - Maximus
    Born at 23 weeks 03 July 12 - 23 July 12 - Anaya
    FET - March 2014 - BFN
    IVF 2 - 08/2015, ER - 13 Aug, ET 18 Aug
    BETA #1 - 84 (9dp5dt), #2 - 225 (11dp5dt), #3 - 1303 (15dp5dt) - 4/15/16
    FET2 - around 26 Jun 17


  6. #5
    Romy69
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    I'm deeply sorry for your loss. It is a beautiful name you chose. In a way, it is a divine intervention that nature took its course. At least you didn't have to go through the painful planned termination. Take the time to mourn your little one and use the time to come to heal your hearts. All the best to both of you and you are a very strong couple who was dealt an awful card.


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