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Life happens. You laugh about it or cry about it, sometimes both.

Ven-TRIC-u-lo-MEG-a-ly

on March 6, 2013

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I learned what this word means today. “Ventriculomegaly” is a condition where a fetus is found to have excess fluid in the ventricles of the brain. A normal brain has four ventricles (two lateral ventricles, the third and the fourth ventricles) that normally do contain fluid, and that fluid drains through each of the four chambers and down into the spinal cord. When the fluid fails to complete this course of drainage, it becomes trapped in one or several of the ventricles, causing swelling. You may have heard of the condition hydrocephaly which is pretty much the same thing. The two terms are used interchangeably when talking about a fetus with the condition. This condition occurs in fewer than two percent of all pregnancies.

Apparently, my pregnancy is one of the lucky ones.

Today I also learned what “Aqueductal stenosis” means. This is a variety of ventriculomegaly where the fluid in the brain becomes trapped between the third and fourth ventricles, causing the two lateral and the third ventricles to swell. This condition occurs in about 1 out of every 2000 pregnancies, and is more common in boy fetuses. It can be caused by a chromosomal or genetic abnormality. It can be the result of an infection the baby contracts in the womb. It can be the result of a missing brain structure that has left a gap that then fills with fluid. It can be caused by who knows what and just appears as a condition. The condition can continue to worsen as the pregnancy progresses, or it may stabalize, or it may miraculously clear up on it’s own though that is extremely unlikely at this point.

My little baby girl appears to have this condition. I’m pretty scared about what’s going to happen.

“Isolated ventriculomegaly” is what you call it when absolutely nothing else appears to be wrong with the fetus. Although, in many cases of the isolated variety, abnormalities are later discovered after all.

Every other measure of growth was totally normal for my baby. She is kicking and moving quite a lot, and she has a strong and steady heart beat. This swelling of the brain ventricles is the only abnormal finding so far. The blood test for chromosomal abnormality came back negative (so not Trisomy 13, 18, or 21). The cause for her aqueductal stenosis is unknown for the time being.img016

The prognosis for babies diagnosed with this condition is uncertain, and depends entirely on what other abnormalities and complications are present. If the aqueductal stenosis is caused by an infection, apparently that is super not good. If it is of unknown cause, that can be better. In any case, the baby will require  postnatal surgery to correct the blockage and assist with drainage in the ventricles. Shunts may be required. Developmental delays are quite common when this condition presents, though most children who have few additional complications go on to live healthy, happy lives.

So I guess on the bright side, it could be worse. My baby could be exhibiting other abnormalities. She could have a devastating chromosomal condition. But she doesn’t. So far the most likely scenario we’re looking at is a slightly higher-risk pregnancy with an increased potential for cesarean delivery, followed by a couple rounds of postnatal surgery. Then a long recovery. Then a fairly normal life with a delightful little girl who may or may not have some developmental delays.

That’s not so bad, right?

If you’re the praying kind, please feel free to do so.

If you’re the praying kind of the Catholic variety, my husband Jeremy and I have chosen Saint Maria Goretti as our baby girl’s intercessor. She’s helped look out for our little one so far, and I’m sure she would be happy to take some more prayers to God on our baby’s behalf.

Saint Maria Goretti, pray for us.

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14 responses to “Ven-TRIC-u-lo-MEG-a-ly

  1. Rosie says:

    Praying for your baby girl to St. Maria! Thank you for sharing so that we know to pray specifically for her and your family as you face whatever God has in store.

  2. Deb says:

    Judy, Jeremy, & Stephen-Know that our prayers are with you and that what ever happens, your faith will see you through these difficult times. Grasp that faith as our lifeline, and know that God is love.

  3. Jennifer says:

    Praying!

  4. Ann says:

    You have my fervent prayers, Judy. All of you.

  5. Kate says:

    Oh, Judy! My goodness that’s a lot to take in. Our family will be praying for yours, and especially your beautiful little girl. I will let Magdalena know (our 5 year old)–she is a huge intercessor for all things baby! She’d be happy to take on a new baby as her spiritual adoptee and pray for your little girl continually! Please let us know if you do decide to name her and tell her name prior to birth so that we can pray for her by name.

  6. Laura says:

    Judy – will be praying for you, your baby and your whole family. One of my best friends has a son with hydrocephaly (wasn’t diagnosed till he was nearly a year old; she always wished they had known about it in utero) and I have learned so much about this kind of condition through journeying with her. Please know that all of you will be in our thoughts and prayers for peace, for all that lies ahead.

  7. […] little boy. I worry what it will be like when I have two kids, the younger one possibly being a special needs child. Will I be able to deal with […]

  8. […] When Jeremy and I found out about our baby’s ventriculomegaly, we started a novena to Saint Maria Goretti and we got a mini miracle. The blood test that tests […]

  9. Barbara Ann Guiliano says:

    Judy, Jeremy and Stephen, my prayers are with all of you and I will be praying to Saint Maria Goretti as well. I know that your faith and love for our dear Savior and Blesssed Virgin Mary will see you through this. Please let me know if there is anything I can do in addition to the prayers for you.

  10. […] For part one of my baby’s story, click here. […]

  11. Debby says:

    Dear Judy and Jeremy, I miss you guys, too. I wish I could be here to see you when you visit St. Bernards, but John and I will be in Ohio, visiting my father-in-law, who has had a bad stroke and is not doing well. Please pray for his peace and comfort. He is 85.
    I am so sorry to hear about your baby’s condition. My prayers will be added to those of the many people who care for you. I think she will be fine after the procedures necessary to correct her condition. I once knew a little boy who had the same, and he was very smart and sweet and good.
    They can do amazing things medically, these days, and I know she will be under the best care from doctors, prayers and her parents. One day at a time is all you have to do. Have a safe trip.

  12. […] Part One: Ven-TRIC-u-lo-MEG-a-ly. […]

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