The rare condition that may cause my baby to be born prematurely – or worse

Here at Beanie Designs, we have a soft spot for premature babies. You’ll be hearing later about some of our initiatives for preemies, but in the meantime I’m going to write about my own experience.

My first son came 4 weeks early. Though he didn’t need any interventions after his birth, this second pregnancy has brought the concern that the new baby may be born even earlier.

Doctors still don’t know what causes premature birth in most pregnancies, so early on my doctors recommended I take a progesterone supplement. (A study has shown progesterone may help in some cases.)

I’m at 32 weeks now. After learning more about what premature birth can mean for a baby, every week that passes feels like a victory.

But just a few days ago, it was discovered that I have cholestasis – a rare condition affecting only 1 in 1000 pregnant women here in the U.S. While the condition goes away soon after the baby is out, many babies born to mothers with this condition are born prematurely.

And if the baby hasn’t made an appearance of his own accord by 38 weeks, doctors will schedule an induction. The reasons for an early induction are chilling. Sometimes the baby is removed as early as 36 weeks if there are complications such as the early presence of meconium.

First, let me tell you a little more about how this rare condition works. Your liver produces bile acids, which are then used by your gall bladder to help with digestion. Cholestasis results when the flow of bile acids is interrupted. In pregnant women, this can be caused by the high levels of hormones estrogen and progesterone (I know! I was taking EXTRA of that!) The liver still produces the bile acids, but they can’t get to the gall bladder, so they build up in the liver and then eventually enter your bloodstream.

For most moms-to-be with cholestasis, this manifests in a super crazy itching sensation, particularly on the hands and feet. The intensity increases dramatically at night, making many moms with cholestasis severely sleep deprived and unable to function well during the day.

However, despite my discomfort, the scary part is this (from AmericanPregnancy.org):

“How will the baby be affected if the mother is diagnosed with Cholestasis?

Cholestasis may increase the risks for fetal distress, preterm birth, or stillbirth. A developing baby relies on the mother’s liver to remove bile acids from the blood; therefore, the elevated levels of maternal bile cause stress on the baby’s liver. Women with cholestasis should be monitored closely and serious consideration should be given to inducing labor once the baby’s lungs have reached maturity.”

I’ve been feeling the itching grow worse over the last 4 nights, to the point where I’ve asked my doctor for the medicine that helps reduce the bile and relieve the itching.  It’s called ursodeoxycholic acid, and it’s basically another bile acid that helps regulate the buildup in your system.

The urso can also help prevent the dangers to the baby, since it will usually bring the level of bile in the bloodstream down.

I’m still waiting on the results of the blood tests to measure bile levels in my blood. But since it takes nearly a week to get the results back, my doctor feels that depending on the tests is not a reliable option. The bile acid in my system can spike with no warning in the meantime. And as the pregnancy progresses, the risk to the baby also increases.

Even though this condition is quite rare, I think it’s one more reason to pay close attention to all the things you notice about your body when pregnant. At my checkups, the nurses routinely asked about swelling and headaches, checked my weight, blood pressure and looked for protein, etc. Everything always checked out fine.

I causally mentioned the itching to my doctor when it was just reaching the point of annoyance, and I am so fortunate she knew of this condition. Since it’s quite rare, many doctors brush it off as the normal sort of itching that goes along with pregnancy.

There’s a lesson to be learned here. Ladies, don’t be afraid to bring up anything odd you notice during your pregnancy with your doctor, even if it’s not one of the routine questions at your checkup! Looking back, I had a milder itching on my hands towards the end of my first pregnancy, but It went away after, so I didn’t think twice. Now I wish I had paid better attention.

A baby hat fit for preemies

Comments (9)

  1. Yacine

    Very interesting Lisa, I never heard of this condition before. Thank you for sharing. You’re so right about telling or asking the doctors about anything. One never knows.

  2. Abigail Sharpe

    How scary, Lisa! Here’s hoping for full-term and no after-effects of the condition.

  3. Lisa

    Thanks Yacine and Abigail for the encouragement.

    Update: I just had an ultrasound and doctor’s appointment this morning. My bile levels are normal, and we’re going to continue to test weekly. The doctor is fairly confident there’s no immediate danger to the baby, but I’m taking the medication as a preventive measure. It has helped with the itching. Typically, after 34 weeks gestation is when bile levels start to rise, anyway, so we’ll see.

    AND, get this, at 32 weeks my little boy is already 4 lbs 14 oz!!! 64th percentile for weight, but it’s encouraging if he does have to come out early, at least…

  4. Dad

    Lisa, I’m really glad for that post of last night, that you’re feeling better and that the little boy you’re carrying is over four pounds. (Just got home last night from PQ and got your news.) So sorry it’s been stressful for you with the bile complications.
    I’m calling today. xoox Dad

  5. Jessica B.

    Lisa,
    My son arrived 3 1/2 weeks early and I know what you mean about taking each week at a time and considering it a victory! I wish you a great rest of pregnancy until you hold your dear baby in your arms. Very interesting article!

  6. Tara Cohen

    Hi Lisa,

    I had never heard of this before. Thank you so much for sharing and educating me. I couldn’t help but think of how, during my daughter’s pregnancy, right at the end (and by that I mean, for the two or three weeks prior to her 3-week-early arrival), my feet and hands itched like crazy and I developed a bumpy rash that disappeared as soon as she was born. Weird. It’s amazing how the whole body is impacted in such unexpected ways by pregnancy.

    I’m so glad you’re past the 32-week mark — such an important milestone. Please let me know if there’s anything I can do for you now or after the baby arrives.

    • Lisa

      Hey Tara, thanks! Yeah, doctors just can’t know everything, so I figure there’s a lot that just slips under the radar. Our bodies are amazing, but sometimes they sabotage themselves, it seems. I wonder if you could have had cholestasis? It’s not usually associated with a rash, but you get bumps from the scratching. Thankfully, your body took care of it and she came out when she needed to, regardless. It’s weird to think that your baby could be safer outside your body even when we might think it’s too early.

  7. Lisa

    Week 33 update: my tests have shown my bile acid levels to be on the rise, though still within normal range. However, due to my symptoms and the unpredictability of the condition, the doctor has already scheduled to induce me at 37 weeks. Daily monitoring of fetal movement by me, weekly ultrasounds and blood tests until then.

  8. Lisa

    Well, the little guy came out of his own accord at 34 weeks! The previous week, I’d received the shots to help his lungs mature, so he did just fine. He was 4 lbs 15 oz at birth, and he had to stay just one extra night in the hospital for jaundice. We were truly blessed. A successful end to a very stressful pregnancy. My final bile acid levels showed at the top of the normal range, though they had been doubling every week for 3 weeks. It was such a dilemma, wishing he would stay in for his healthy development, yet never knowing when the bile would reach a dangerous level.

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