With any new adventure in life, like having a baby, information is key. Should you decide to pursue pregnancy, you will find support and resources in the community and through your care team.
There are so many ways to start or grow your family! Get informed about different options available to you to discuss with your family and doctor. Remember The Girls is a nonprofit organization that provides helpful information for carriers of OTC-D who are considering having a baby.
During pregnancy, you may need to visit multiple healthcare specialists to ensure you are staying as healthy as possible. For example, in your first trimester, a lack of appetite and nausea can increase your risk of having dangerously high ammonia levels. Making sure you’re eating enough of the right foods is important. Your care team will help you with that.
You can best take care of your baby when you’re taking care of yourself as well! It's important to understand that your body may need varying amounts of protein or supplements during different stages of your life, including pregnancy.
During your pregnancy and 6 months after you give birth is the time that will require careful attention to your diet. In the first trimester, your baby needs a sufficient amount of nutrients, even if you’re feeling nauseated. Your low-protein diet will be monitored and protein intake may increase during your second and third trimester at the direction of your doctor.
Every pregnancy is different, with or without being a carrier of OTC-D. Talking with your doctor about which delivery method is best for you will help you prepare for welcoming your new baby into the world. Connect with other community members to see what worked for them and start to collect resources and support materials. That way, if your baby is born with OTC-D, you will be ready. Advocating for your child starts even before they are born.
Being a mom is one of the most rewarding things. I never thought that I would become a mom after losing my son, but there’s hope. You will encounter trials but everybody does and you will get through it. And you’re not alone. Nobody is alone.”
As a mother living with OTC-D, you are balancing your own well-being and your child's care. Explore the importance of being your child's biggest advocate as an OTC-D caregiver.
Amy:
It took me a few times, but now I’m that hospital mom momma bear. …After the lab techs come up, and they poke her twice…I’m the mom that’s not afraid to ask for the anesthesiologist because…if they waste 6 different poke sites, just trying to start one IV, we’re gonna be in trouble for that whole hospitalization.
And I had had different experiences with doctors and hospitals, so I knew right away that if you walk in and you act like you own the meeting, you own the meeting. And that’s what I did.
You have to be aware of what’s going on. And you know your child best.
David:
Thank God for doctors.
…They’re trying to do their best to serve you… So you have to treat them well. But at the same time you have to be an advocate when you present to a, ah, an emergency room or a medical situation with your child.
You won't get it from yelling. Don’t do anything like that. Just persistently be an advocate for your child.
You have to do it as a parent, and we’ve been teaching our son, to be his own advocate.
Do it sternly, firmly, consistently. Do not back down. If you do not get results, find somewhere where you can.
Imagine the power of chatting with others who understand the X-linked OTC-D journey! Sign up to learn about live and virtual events throughout the year.
Find specialists in your area who understand OTC-D carriers and can help with your management plan.
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects. Call your doctor or get medical help right away if you have any of these symptoms while taking RAVICTI:
Your doctor may do blood tests to measure the amount of PAA in your blood during your treatment with RAVICTI.
Do not take RAVICTI if you are allergic to phenylbutyrate. Call your doctor or go to the nearest hospital emergency room if you have wheezing, shortness of breath, cough, low blood pressure, flushing, nausea or a rash while taking RAVICTI.
Before taking RAVICTI, tell your doctor about all of your medical conditions, including if you:
RAVICTI may cause serious side effects, including:
See "What is the most important information I should know about RAVICTI?"
The most common side effects of RAVICTI in adults include:
The most common side effects of RAVICTI in children 2 years to 17 years of age include:
The most common side effects of RAVICTI in children 2 months to less than 2 years of age include:
The most common side effects of RAVICTI in children less than 2 months of age include:
These are not all of the possible side effects of RAVICTI. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
For additional Important Safety Information, click here for the Medication Guide and discuss with your doctor.
RAVICTI may cause serious side effects, including:
Nervous system side effects (Neurotoxicity) Phenylacetate (PAA), a breakdown product of RAVICTI, may cause nervous system side effects.