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.
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.
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.
Many families have this same question. Sometimes doctors do not know why this happened to this particular pregnancy, but it is important to talk with your doctor.
Technology has helped to 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 a neonatologist will examine your baby.
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.
To help plan for your future pregnancies it is recommended that you meet with a geneticist, maternal fetal medicine doctor (high risk) 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 certain recommendations.
It is important that you ask this question to your obstetrician, maternal fetal medicine doctor (high risk doctor), geneticist and/or pediatric specialist. The doctor can provide you with the statistic on how often this occurs in an affected population (how rare is this).
Your doctor will have a detailed plan to watch your pregnancy very closely. It is important to follow the plan and call your doctor if you have any questions or concerns during your pregnancy.
It is important that you follow all of the 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.
In order to help prepare for the birth of your baby it is suggested that you meet with a maternal fetal medicine doctor (high risk doctor), geneticist, and pediatric specialist. The doctors can discuss the diagnosis, treatment plan, and recovery for your baby after birth. The doctors will help answer your questions and concerns.
For pregnancy related questions and concerns please call your obstetrician or maternal fetal medicine specialist (high risk doctor). If you have questions regarding Nationwide Children’s Hospital, Fetal Diagnostics program you may contact the nurse coordinator at (614) 722-6520.
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.
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.
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 and nurses will keep you updated on what is happening to your baby every step of the way.
There are times when babies are born very sick and may not survive. Doctors and nurses will provide the best possible care to your baby and keep you informed every step of the way.
There is a transport team at Nationwide Children’s Hospital 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 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 Hospital.
There are many resources available to you. You can visit the Nationwide Children’s Hospital website or ask the nurse coordinator for assistance. Other services available for you include: social workers, chaplain, support groups, and lactation consultants.
Yes, there are family support groups available for specific conditions for example: heart conditions, spina bifida. Please ask the nurse coordinator for more information on support groups available for you.
Many times there are families who are willing to talk with you about the same problem they have gone through with their baby. The nurse coordinator will try and link you with one of these families.
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.
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.
At Nationwide Children’s Hospital parents may visit 24 hours a day. For all other visitors, the visiting hours are 8 a.m. to 8 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.
Nationwide Children’s Hospital has a wonderful Ronald McDonald House located within walking distances for families who live outside of Franklin County. Families may stay at the Ronald McDonald House while their child is in the hospital. Ask the nurse coordinator if this can be arranged for you.
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).
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. There is storage available for breast milk in the neonatal intensive care unit. Please talk with the nurse coordinator or lactation specialist if you have any questions.