This is a family resource guide on frequently asked questions for parents and families who learn that their unborn child will be born with a birth defect. This general guide is to help answer some of your questions. It is important to talk to your doctor or health care professional if you have specific questions regarding your pregnancy and situation.

Common Questions We Hear at The Fetal Center

Do I need a referral from my doctor?

No. You can reach out to the Fetal Center team directly.

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Can I get a second opinion at the Fetal Center?

Yes, we offer second opinions for families seeking one. Depending on your preference, in-person or online second opinions can be set up with one of our fetal experts.

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Can I still breast feed my baby?

Yes! The health care team encourages mothers to provide breast milk to their baby. Breast milk has nutrients and infection-fighting antibodies that all newborns need to grow and develop. If you decide that you want to provide breast milk and your baby will need special attention after birth, you will need to pump and store your breast milk in the freezer until it is time for your baby to take your breast milk. If you would like to speak with a lactation specialist at Nationwide Children’s call (614) 722-5228.

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Can I talk with other families who have gone through the same situation?

Nationwide Children’s offers a Connecting Families Mentor Program. The purpose of this program is to link families who have been there with families who are just getting started so they can help each other normalize life after diagnosis. You can get more information, and request a mentor, at NationwideChildrens.org/Connecting-Families.    

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Did I do something to cause this to happen to my unborn baby?

Parents often ask themselves if they did something to cause this to happen to their baby. That is a very natural response. In the vast majority of cases, parents have no control over their baby’s condition and have not done anything to result in the situation. If you have a specific concern about a medicine, illness or exposure, you should ask your doctor.

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How do I take care of myself?

It is important that you follow all recommendations from your doctor. Get plenty of rest, eat a well-balanced diet and take your prenatal vitamins. It is important to stop smoking and avoid second hand smoke (people who smoke around you) during pregnancy. Avoid alcohol and other drugs during pregnancy.

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How do I tell my other kids?

Telling your children about the new baby’s health problem may help to prepare them for the special attention your baby will need after birth. Consider keeping the explanation brief, but allow your children to ask questions. Your children may be scared at first, but telling them may help ease their concerns. It is also important to tell your children that the baby will have to stay in the hospital for a while or possibly months.

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How long will my baby be in the hospital?

This can vary. The pediatric specialist will be able to give you an estimated length of hospital stay depending on the baby’s condition and diagnosis. Each child is different and the doctors can only give you a general idea about the length of stay. Sometimes the stay is shorter or much longer.

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How often may I visit my baby at Nationwide Children’s Hospital?

At Nationwide Children’s, parents and grandparents may visit 24 hours a day. For all other visitors, the visiting hours are 8 a.m. to 9:30 p.m. The Neonatal Intensive Care Unit (NICU) allows siblings to visit as long as they are up to date with their immunizations and not running a cold or fever. All other visitors must be 12 years or older. During the influenza (flu) season Nationwide Children’s may restrict visitors and siblings to help protect the children and babies at the hospital. Please note the following about visiting: White Parent Badge Must be worn at all times. Go to Admitting office to obtain parent badges. Guest Code Guidelines/Visitor Badge The guest code is a password you create for family and friends who may potentially visit your child while he or she is a patient. All visitors are required to provide this code before they will be permitted access to the inpatient areas of the hospital. Stop by the information desk in the main lobby to receive your Visitor Badge. Visitors under the age of 12 must have an infection checklist completed at the welcome desk in the lobby. If any exposure or symptoms exist, visitor may not visit. Blue Legal Guardian Bracelet The blue legal guardian bracelet is an important piece of identification for both the clinical staff and security staff. We ask that you wear the bracelet the entire time your child is in the hospital. White Key Card This will grant you access to the elevators and doors of the unit where your child is staying. Nationwide Children’s Hospital Naming Policy During your baby’s stay, the mother’s last name from the birth hospital will be used to identify your baby for this hospitalization. If the name on the birth certificate is different, then the birth certificate name will replace the hospital name when your baby is discharged to go home.

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How should I tell my family and friends?

Everyone approaches this differently, but it is normal if you do not want to talk about it right away to family and friends. When the time is right and when you feel comfortable sharing, sit down and tell them openly and honestly about the situation.

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How will my baby be transported to Nationwide Children’s Hospital?

There is a transport team at Nationwide Children’s that specializes in transporting babies from the delivery hospital to Nationwide Children’s Hospital. The transport team consists of certified nurse practitioners, registered nurses, respiratory therapists and paramedics. The neonatologist (baby doctor) at the delivery hospital will decide on the timing of transfer to Nationwide Children’s Hospital. The parents will have an opportunity to meet the transport team prior to your baby being transported to Nationwide Children’s. Watch a video about a family experiencing this process at NationwideChildrens.org/Transport.

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I don’t live in Columbus. Can I still be treated at the Fetal Center at Nationwide Children’s?

Yes. Nationwide Children's is one of only a few fetal centers in the United States that offers a full range of fetal therapies, including fetal intervention and fetal surgery. Nationwide Children’s provides care to families from around the globe. We have a full team who can help coordinate your travel and lodging.

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Wow, I feel very stressed and overwhelmed right now. Can I talk with someone who is not my baby’s physician?

Yes, having your baby in the hospital is very stressful. There will be many pediatric specialists taking care of your baby. While your baby is in the hospital you will meet the support team who are available to help support you during this stressful time. The support team consists of psychologists, chaplains, social workers, family liaisons and nurses. Please speak with the nurse coordinator about support services if you have any questions or needs before the birth of your baby.

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I live out of town. Where can I stay?

Nationwide Children’s Hospital Global Patient Services assists out-of-area and international families with concierge services such as travel arrangements, lodging and connections to needed resources to make the family’s visit to Columbus as comfortable as possible. Contact Global Patient Services at (614) 355-9866 or email GlobalPatientServices@NationwideChildrens.org for more information or to request services. Ronald McDonald House of Central Ohio is located within walking distance from Nationwide Children’s Hospital. Families who live outside of Franklin County may stay at Ronald McDonald House while their child is in the hospital. Ask the nurse coordinator if this can be arranged for you. For more information, visit NationwideChildrens.org/Ronald-McDonald-House.

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If I am not able to visit Nationwide Children's can I call and get an update on how my baby is doing?

Absolutely! We understand that this is a difficult time for you and we encourage parents to take breaks and get plenty of rest outside of the hospital. When you are calling to get an update we will ask you the “Care Code” which is the last 4 digits of the current account number. The number will be located on your blue wrist band. We only give information to parents over the phone.

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What are the next steps?

Your doctor will have a detailed plan to watch your pregnancy very closely. For pregnancy related questions and concerns please call your obstetrician or maternal fetal medicine specialist (high-risk pregnancy doctor). If you have questions regarding Nationwide Children’s Hospital, Fetal Medicine Department, you may contact the nurse coordinator at (614) 722-6520.

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What is my Primary Pediatricians role when taking my baby home?

You will want to find a local pediatrician to take care of your baby’s routine checkups, immunizations and doctor’s visits before you go home from Nationwide Children’s Hospital. The pediatric specialist at Nationwide Children’s will follow up with your baby’s medical and or surgical needs. It is best to choose a pediatrician while you are pregnant in order to avoid any delays in the discharge process.

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What items can I bring to the hospital?

Baby clothes with side/front snaps. Make sure clothes are labeled with baby’s name and are clean and free of strong odors. Baby blankets Mobile once baby is in open crib Music 1-2 small stuffed animals 1-2 pictures of family to tape on hospital bed No balloons or live plants

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What will happen to my baby in the delivery room?

You will deliver your baby at a hospital that is prepared to care for high-risk babies. Immediately after your baby is born, the newborn specialists called neonatologists will be in the delivery room to examine your baby. The doctors will examine your baby’s breathing and color first. If the baby is having problems breathing a special tube called an endotracheal tube will be placed in the airway to help your baby breathe. During this time parents will not be allowed to hold the baby. If the baby cannot take breast milk or formula, an intravenous line will need to be started to prevent dehydration. The neonatologist (baby doctor) and nurses will keep you updated on what is happening to your baby every step of the way.

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When can I feed my baby breast milk or formula?

Timing varies from baby to baby. It also depends on whether the baby needs surgery. If your baby cannot take breast milk or formula right away, he or she will receive nutrition through an IV (intravenous line).

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When can I hold my baby?

It is very difficult when you, as parents, are not able to hold your baby. The health care team will allow you to hold your baby as soon as he or she is stable, and it is safe for your baby to be held.

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Who can I call to ask questions and concerns while I am pregnant?

For pregnancy related questions and concerns please call your obstetrician or maternal fetal medicine specialist (high-risk pregnancy doctor). If you have questions regarding Nationwide Children’s Hospital, Fetal Medicine Department, you may contact the nurse coordinator at (614) 722-6520.

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Who can I meet with to talk about my unborn baby’s condition?

You will have the opportunity to meet with pediatric specialists at Nationwide Children’s to discuss fetal diagnosis, anticipated recovery and potential outcomes while providing supportive care. During your visit, the nurse coordinator will provide information and a tour of Nationwide Children’s Hospital.

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Why can’t anybody tell me exactly what is going on with my unborn baby?

Technology has helped diagnose conditions before a baby is born. The information the doctors have now will help prepare for the delivery of your baby. While you are pregnant, doctors can explain the range of events that may occur after birth. After your baby is born a newborn specialist called neonatologist will examine your baby.

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Why did my doctor offer me an amniocentesis?

An amniocentesis is a prenatal diagnostic test that can help diagnose or rule out some chromosomal abnormalities and sometimes other conditions. It is important to talk with your doctor about the risks and benefits of this test. This test may give you and the doctor more information about the cause on the ultrasound findings and may help plan for the delivery and care of your baby.

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Why did this happen to me?

This is a very difficult time for parents and families who find out that their unborn child will be born with a birth defect. Questions of, “Why did this happen to me?” are very normal during this time. The exact reason why this happened to your baby is sometimes very hard to discover. Research shows that it is usually a combination of many factors.

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Will my baby be delivered at Nationwide Children's?

Where you deliver your baby will be determined by your care team to make sure both you and baby are cared for safely. For some patients, delivery may be at your home hospital while others may need to deliver here at Nationwide Children’s. Your care team will help walk you through your delivery plan options throughout your pregnancy and help with coordination of care for your baby after birth.

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Will this happen to future pregnancies?

To help plan for your future pregnancies it is recommend that you meet with a geneticist, maternal fetal medicine doctor (high-risk pregnancy doctor) or obstetrician before conceiving (becoming pregnant) again. They can help to determine what your risk may be for a future pregnancy. They can also make recommendations.

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