Some Difficult News

You know, I feel for the doctors who know that they are about to have to give parents or patients some troubling news. There we were, sitting in a pregnant (pun intended) silence as the perinatologist waved the ultrasound wand back and forth across my belly, looking at my baby’s heart from every possible angle. I felt like blurting out, “Ok, I know something is wrong. What is it?!” But instead we waited as the silence stretched out forever and I contented myself with praying.

First of all, the baby is a girl! Just call us the Bennets; although, quite frankly I don’t much like the idea of being Mrs. Bennet.  I promise not to call one of my daughters “the beautiful one” and try to force one of them to marry her cousin.

But on to the heavy stuff, as I must divulge because I have grown to love the support system I have here, and we need all the support we can get. Baby girl’s heart has a defect, that will need surgery after she is born. We don’t know exactly what the defect is yet, because she was a wiggler and didn’t let the perinatologist get as much of an in-depth look at it as she would have liked. We have to go see the fetal heart specialist soon to ascertain what exactly the defect is (the perinatologist gave us a few possibilities, but of course I didn’t recognize any of them, so I cannot remember them) what kind of surgery she would need, and when.

She also had some physical markers that could signal Down Syndrome or one of the Trisomy disorders. I declined the amniocentesis because I didn’t think the risk of losing her, no matter how small, was worth it since we would find out what exactly was going on after her delivery regardless. I did agree to do the blood test, but there is a small chance the blood test results could be inaccurate. We get the blood test results back in about a week.

I know the reporter at this point would ask me, “So how do you feel?” Well, I feel how you would expect me to feel, I guess. I have cried a lot, but I have made sure to wipe the tears, fix the makeup, and put on a cheery smile for the girls. I’m not at all concerned if our girl has Down Syndrome, because I know too many precious children with Down Syndrome. What I am devastated about is her heart condition and the possibility of one of the Trisomy disorders, because I know those can be deadly. I am worried sick. But Padre Pio said, “Pray, hope, and don’t worry. Worry is useless. God is merciful and will hear your prayer.” The question is, what is my prayer? I would think that most importantly, I pray that we do God’s will, and for what we cannot control, God’s will be done.

It’s all extremely painful for Scott and me, but I am actually looking forward to the rest of this pregnancy now, with baby girl being all snug and safe inside of me. Right now, I am doing all of the work for her and shielding her from any pain and suffering, just as every mother desires to do for her children.  If we could, we would shield them from it for the rest of their lives, but that is not feasible. So, I am going to relish every second of this. As the Dread Pirate Roberts once wisely said to Princess Buttercup, “Life is pain, Highness. Anyone who says differently is selling something.”

Jesus never promised us a life free from suffering. He said: take up your your cross and follow me. (Matthew 16:24.) So, here we are. We love this baby girl and with God’s grace we will take up this cross of her health complications and follow Him.

If you could spare a moment to pray for us, I would be forever grateful. One thing is for certain, this is going to be a long journey and I am going to need plenty of courage for it.

I wish I could put a picture of baby girl’s sweet profile here, but the perinatologist didn’t give us any of the ultrasound photos. I don’t know why. I asked for them, but they said that they would email them to me and I still haven’t received them. Hopefully, they will send them soon. I did enjoy seeing her cute little face. She was yawning and putting her little fingers in her mouth.

22 thoughts on “Some Difficult News

  1. Hartley Glass

    Sylvia, we are praying for you and your sweet baby and family. All of your girls are blessed to have you as their mama!

  2. Krissy

    Just wanted you to know our son’s DS was also suspected during a routine ultrasound and we chose not to get the amnio either, as the results would not have changed the outcome or any decisions we made. We were grateful for the time we had to grieve and to prepare ourselves emotionally and mentally. Our son is 11. He is the 2nd of 4 children and we can’t imagine life without him. He, thankfully, had no heart issues. Unfortunately, he had every other issue! 😉 We spent a good amount of his first 4 years in hospitals and therapies and while he is not quite like the other DS kids we see around our community, he is like a different kid – so much healthier than he was. We joke with other parents (hope this isn’t insensitive) that if we had to choose a disability, it would be DS. There is no misunderstanding his diagnosis. We don’t have to fight for services, we don’t get odd looks out and about and their “issues” are pretty straightforward. He’s an absolute riot and fits right in with our crazy clan. Your daughter, obviously, will be so loved. Her sisters will learn that beautiful trait of empathy and grow to have wonderful kind and sympathetic hearts. They will care fiercely for their sister and take care of her when you are gone. Kids with DS are such a bright spot in a sometimes dreary world. They make you laugh when you want to cry and the absurdity of some situations will leave you in stitches, make you want to pull your hair out, grow in an unmatched love of your spouse when you see them rise to the occasion and give you so many opportunities to meet amazing people with so much selflessness and love, your heart will want to burst right out of your chest. Yes, they are definitely a gift. Don’t over whelm yourself at first. Just love your baby. Everything else will fall right into place. I pray that her heart troubles are fixed completely and immediately. Your family is in our family’s prayers. Oh and huge CONGRATULATIONS on #4. You’re populating the world with good and wonderful people – great job! <3

    1. Post author

      This was just what I needed to read today, THANK YOU! God bless you and your beautiful family.

  3. Ellen Johnson

    It is so difficult to having faith with all the uncertainty; it’s something I struggle with almost every day. But I so admire your attitude facing the uncertainty and cherishing your pregnancy with your little girl. I’ll be praying for both of you!

  4. Lindsey

    All of your babies are so blessed to have you as their mamma! Prayers for you and your sweet girl.

  5. sweepingupjoy

    We will add you and your family to our family’s nightly prayers in about 10 minutes.

    As someone who struggles with recurrent pregnancy loss, I never know how long my babies will be with me. That means I work really hard to treat every day as a gift. Every story read, every silly song sung to my older kids is for the unborn baby as well. Perhaps thinking this way can help you with your worries.

  6. juliaattheritz

    Such a beautiful perspective; to cherish pregnancy because you can keep your little one safe and sound, tucked away from pain and suffering (which really, is what we want for our babies). Love you and love sweet Baby Girl. xoxo

  7. Justine

    I am so sorry for your news. This must be so heavy on your heart! We will be praying for your sweet girl and your family for strength and perseverance for whatever is to come. And above all, hope. <3

    And for what it's worth, your Bennett line is gold. Mrs. Bennett is hilarious 🙂

  8. Alanna

    My niece was born with a critical congenital heart defect (TAPVR) and had open heart surgery at 16 hours old. Her recovery went smoothly and she was home exactly 2 weeks after being born. Praying your little girl has a heart that can be fixed and she’ll love a long happy life. She is so blessed to have you as her mama!

  9. Rachel O

    Oh my heart aches for you in hearing this news. You and your sweet baby will be in my prayers. May the Lord in His goodness, provide you with the faith and hope for all that lays ahead.

  10. storiesofourboys

    Oh my goodness. I am so sorry to hear this. I will pray for God’s healing hands on your baby. And I will pray for you to have the support you will need in the process. Sometimes the process is the hardest part.

  11. Rosie

    Oh friend! So many prayers – I feel like the uncertainty of things is the hardest part and I hope you have answers soon, but in the meantime know that we are all covering you with prayers!

  12. Kim Johnston

    I couldn’t think of a better family for God to trust with this precious soul. You will all be in my prayers, but I rest in knowing God has a plan. xoxo

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