Does Baby Barrett #2 Have PKU?

There is nothing more rewarding or exhausting than becoming a parent. You never stop worrying about the well being of your family.

After Boston was diagnosed with PKU the thought of having another child was hard; I struggled with guilt since it is a genetic disease. I battled with the decision of adding more children to our family due to the 25% chance that our next child would have PKU.

I’ll be totally honest for a while it was a HARD NO for me. I was scared and afraid our next child would blame us if they were diagnosed with PKU. Not to mention besides the PKU our first few months were pretty traumatic with Boston and I was just downright scared to have another child.

Don’t get me wrong Boston having PKU is not the worst thing in the world. He gets the EXACT amount of protein he needs each day. He is measuring and weighing off the charts. He is extremely healthy and this life has become our new normal.

BUT now that we know we are carriers for PKU, Do we take the risk?

It was never our intention when we started our family to have one child. I am not knocking those who choose that by any means, that just wasn’t our plan for our family. If my husband had it his way we would have 5, but I settled for 2-3 depending on genders. Ha!

After a couple of months I decided that maybe adding another child to our family wouldn’t be that bad. We met lots of other families who had 1 out of 3 kids with PKU and 2 out of 2 kids with PKU. It would either be a PKU buddy for life for Boston or teach him that he eats a little differently before he went to school; either way we were at peace.

Well, God always has his own plan in store and we recently found out we are expecting baby #2. We are so excited to be adding another bundle of joy to our family. We are due spring of 2018.

My husband and I decided to have a test performed to see if the baby had PKU.

The test we chose to have done is Chorionic villus sampling.

You can click here to know more about the procedure, risks, and what it tests for.

I thought the procedure was painful but tolerable. Its not something I would sign up to do for fun, lets just say that.

I am grateful that I had a doctor who performs these every other day, so he’s very good. We used Dr. Weiss in Dallas and we were very happy with him and his staff and my results were back within 2 weeks.

Do you have to have genetic testing done? Absolutely not!

We chose to do it because so many things were out of our control when Boston was born that we felt it would help to alleviate stress; regardless of what the test showed we would never terminate, we just wanted to know. Boston was rushed for emergency surgery at 23 hrs. old (we didn’t know he had PKU at the time) and he was given packed protein following surgery to help him heal. Had we known in advance he had PKU he wouldn’t have been given that and his levels would have been much different in that first week.

When we did our CVS test we also found out Baby Barrett #2s Gender.

It’s a …


And he doesn’t have PKU.

I think regardless of the results I was going to feel indifferent. I was sad Boston wasn’t getting a PKU buddy for life (someone to understand his diet and go through the same struggles with him) and relieved that I didn’t have to count everything this next baby ate. Either way the results went I was going to feel indifferent but I’m glad we did it.

I hope this helps another family struggling with the decision to add another child to their family and hopefully our experience will help someone else to be more knowledgeable about testing, if that is what they desire.

3 thoughts on “Does Baby Barrett #2 Have PKU?

  1. Ola. Sou brasileira e mãe de um bebê Pku de 1 ano de idade. Descobri seu blog e adorei! Me identifico muito com as postagens e situações vivenciadas. Fico muito feliz por você, por ver sua família crescendo. Muita luz e paz para este novo garoto! Também imagino que não é fácil estas misturas de sentimentos. Que bom que fez o exame e já se prepara psicologicamente.
    Eu já tenho um filho mais velho sem Pku, e gostaria muito de ter um terceiro, mas ainda estamos pensando na possibilidade. Tenho as mesmas dúvidas que você tinha. Um abraço Fabiana batista


  2. I’m right there with you, mama! Our first was diagnosed with PKU and though we didn’t find out if baby #2 did or did not have PKU before birth, I had the same thoughts. Our second also does not have PKU, but I remember feeling so indifferent about it. I was ecstatic for her, but a little sad for our PKUer. Regardless, PKU still hasn’t stopped us and we’ll welcome baby #3 in just a few weeks (again, not knowing the PKU result until SHE arrives). Congrats on baby boy Barrett #2!


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