Hand to Hold's Official Blog: Written by Parents for Parents

My Preemie has a Birth Defect

I was so excited and happy when I found out I was pregnant. Even though I was 37-years old, and of “advanced maternal age,” I was not at all worried about having a complicated pregnancy. I was just so thankful that I was finally going to be a mom!

As time went on, I was feeling pretty confident that I was doing everything right to ensure I also had a healthy baby, as well as, a healthy pregnancy. Then, it was time for the mid-pregnancy ultrasound at 19-weeks where your baby’s anatomy is scanned. While we never found out anything other than “yup, you’re definitely having a boy” from the ultrasound tech during the actual appointment, my OB/GYN broke the news to me during my next check-up with him a month later.

prayersThe news was that my son had a possible cleft palate. Come to find out, after getting a 3D ultrasound, he had both a cleft lip and cleft palate. Looking back, I can be thankful that his dad and I found out as soon as we did. More often than not, clefts and other birth defects are not discovered until after birth. At least we had a few weeks to process the news and learn as much as we could before Ben was born prematurely at 29-weeks after I developed severe preeclampsia.  So, long story short, I failed at preventing my baby from having a birth defect and failed at having a healthy pregnancy. But, I have made a promise to myself – a pretty serious New Year’s resolution – to no longer torment myself with wondering what went wrong during my pregnancy and wondering if I had done something wrong.

http://www.nbdpn.org/national_birth_defects_prevent.php

Credit: http://www.nbdpn.org/

So, in honor of my resolution, I am writing this article for January since its National Birth Defects Prevention Month. Understandably, prevention is not a word I think many of us are all that comfortable with anymore, so if there is only one thing you take away from reading this, my hope is that you know for most birth defects, there is no known cause. Maybe I am emphasizing that more for myself then anyone else. But, it’s important for all of us mothers to know, and accept, that fact. As well as, wholeheartedly, knowing we had no control over our preemie’s early birth. Nonetheless, it is equally important for all of us to educate ourselves about birth defects and how we can improve our chances of having a baby born without one.

The Centers for Disease Control and Prevention (CDC) estimates that 1 in every 33 babies born each year are affected by a birth defect. Some of the more common birth defects are: congenital heart defects, spina bifida, Down syndrome, and cleft lip and palate.

It’s important to note that being pregnant with a baby who has certain birth defects, such as a congenital heart defect or spina bifida, can cause him or her to be born prematurely.

The CDC also explains some of the risk factors that can increase the chance that a pregnancy will be affected by a birth defect.  These include:

  • Consuming alcohol, smoking, and using certain drugs.
  • Having certain medical conditions, such as uncontrolled diabetes or being obese.
  • Taking certain medications.
  • Having a family history of a birth defect.
  • Being over the age of 34.

Not surprisingly, the risk factors for having a baby born prematurely include most of these, as well. Reading through them, you may know of mothers who had some of them and went on to have perfectly healthy babies. Still, we should never ignore those risk factors just because they don’t always have a negative impact on a pregnancy. For myself, I knew my age was an issue, but I could not let that alone be the deciding factor in whether to have a baby or not. Just as you would with any of the risk factors, I talked to my doctor about it and he told me some of the things I needed to do to ensure the best possible outcome for my baby:

  • See him regularly!
  • Get 400 mg of Folic acid every day, as well as eating an overall healthy diet.
  • Prevent infections.
  • Stay up-to-date on my immunizations.
  • Maintain a healthy weight.
  • Avoid alcohol, smoking, and “street” drugs.

While my baby did not have as good of an outcome as plenty of other babies born to 37-year old moms, he still had the best outcome I could have hoped and prayed for! With that in mind, here’s to a happy and healthy 2015 for all of you and your preemies. And I am praying for peace. Peace of mind for each one of us, as well as for peace in the world.

Beth Puskas About Beth Puskas

Beth Puskas (NY) is a children's librarian and has one child, Benjamin, born by emergency c-section at 29-weeks after Beth developed severe preeclampsia in 2013. Ben also was born with a cleft lip and palate. He came home after a 68-day stay in the NICU and spent the next year having his cleft lip and palate repaired. Despite a global developmental delay, Ben is a thriving, happy, toddler who loves to laugh. Beth hopes to use her experience to help other families.

Comments

  1. I feel your heart in this article. Thank you for writing so honestly. I’m also 37 and my hubbie and I are having our first child.

    Pregnancy has taught me how very little of real life is in our control. It scares me, really. At the same time, I’m grateful for this little one’s life. I maintain healthy habits…but in the end, he will be who he is meant to be.

    I wish you and your partner and new little life all the happiness and love you could possibly endure 🙂

  2. Beth PuskasBeth Puskas says:

    Thank you for your kind words, Adina! And congratulations 🙂

  3. Hello! I came across your post and had to introduce myself. I have boy girl twins born premature at 26 weeks. They are 9 months now (6 mos adjusted). They are doing very well. My son also has a cleft in his soft palate. There was also no explanation why he was born with it. I love your positive attitude and would love to talk to you more. My son’s surgery is this December and I’m getting very nervous as it’s getting closer. It was comforting reading your story and seeing how well your son is doing!

    • Hi Michelle,
      Its so nice to hear from a fellow mom of a preemie who also has a cleft! I have not met one before. I am glad my story has comforted you some and if its any consolation, I found the wait for the surgery much harder than the recovery. My son did amazingly well after his palate repair and was discharged the very next day. I will say the first twelve hours after were rough, but he started taking bottles (they only allowed him to be fed with a Haberman bottle) and eating purees after that. I am not sure if this is the first surgery you all have been through, but just be prepared that on top of any discomfort he may experience from the surgery, waking up from the anesthesia can be pretty hard. If you can have someone else there with you during the hospital stay, they would be better for you! My son wanted to be held a lot and you need someone who can relieve you. Some of the nurses would also hold him, but I don’t think you can always count on that.
      Once you are home, make sure you have plenty of tylenol and motrin on hand. Check with your son’s doctors, but we staggered doses of both and that managed our son’s pain much better than doing just one or the other.
      Overall, my son recovered faster from the palate surgery than he had from his lip surgery. Not sure why, but please be continue to be encouraged by how well my son did and is doing. He had only minor issues with eating after (sensory stuff) and now eats a wide variety of foods at 2 1/2. He eventually transitioned from the haberman bottle to a straw cup.
      I will stop now before I go on too long. Free feel to email me with any questions or concerns you think I might be able to help with you with. My email is bethbagel[at]gmail[dot]com
      Just know your son is going to do just great! He has preemie superpowers 🙂
      And thanks so much for writing!

      • Desiree Talamai says:

        Im also a mom of a preemie born with bilateral cleft n palate… drs told us he will be needing a stomach tube… did ur baby need it?.. i feel like theyre rushing… they did a bottle feed once n because he didnt suck… they’re still using feeding tube..

        • Hi Desiree,
          The exact same thing happened when my son was in the NICU. He couldn’t get the whole “suck, swallow, breathe” rhythm down and they were insisting he would have to go home with a feeding tube. I also did not feel they were giving my son enough time to get hang of bottle feeding. He was only 37-weeks when they started getting pushy about it, but we stood our ground and he did not end up needing a feeding tube at home.
          My son also was not able to suck a regular bottle. We had better results using a Haberman feeder to feed him. What bottles have you tried?
          Feel free to email me at: bethbagel@gmail.com if you are more comfortable writing that way!

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