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Your Special Child

Getting the support you need when your baby has health issues.

Pregnancy is a natural event that usually results in a healthy, full-term baby. However, sometimes there may be issues that result in a baby being born too early or with health problems. These may arise due to conditions that the baby inherited from the mother or father, or may be the result of something that happened during pregnancy that was beyond parental control. Therefore, the baby may have significant health issues, or the child may not be expected to survive very long.

In the past, expectant moms had no way of knowing if there were problems with their babies until the birth. However, today we have more information than ever before regarding health problems, and new technologies can detect potential problems during early pregnancy. In some situations, early detection allows medical treatment that can prevent premature birth or that remedies health problems. In others, early detection enables you and your partner to make decisions that are right for the baby and your family.

A routine ultrasound, regular exam by your obstetrician or other healthcare professional, or your observation during pregnancy may suggest the need for further tests or lab work. Your provider may also suggest you see a specialist called a perinatologist who provides care for expectant mothers and fetuses who are at risk for complications. The perinatologist will determine if you should also see a neonatologist, or a specialist who take care of babies born prematurely or babies born with complications.

Which additional tests might your provider or others to whom you are referred recommend? Some common tests follow.

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Blood Tests
Some tests measure the level of alphafetoprotein (a protein produced by the fetus) in the mother’s blood. The results may provide information about chromosomal abnormalities (such as those that lead to Down syndrome) or potential birth defects of the brain or spinal cord (open neural tube defects). Your provider may also recommend a glucose challenge or a glucose tolerance test. Such tests measure the levels of sugar, or glucose, in the mother’s blood to help diagnose diabetes that develops during pregnancy (gestational diabetes).

Additional Ultrasounds
In addition to routine ultrasounds, additional ultrasounds may be indicated for various reasons at any point during pregnancy. Ultrasound uses sound waves to look inside the uterus and can look for fetal abnormalities, check the amount of amniotic fluid or blood flow, examine the placenta, observe fetal behavior and activity, monitor fetal growth or any number of other reasons.

Amniocentesis
This is a procedure in which a small sample of the amniotic fluid that surrounds the fetus is removed. This test allow diagnosis of chromosomal disorders and open neural tube defects.

Chorionic Villus Sampling (CVS)
This is a test in which a small sample of the placenta is removed and tested for chromosomal abnormalities and other genetic problems.

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Fetal Monitoring
This test may be conducted just before your baby is born or during labor. Fetal monitoring checks the rate and the rhythm of the fetal heartbeat either buy using a fetoscope, a special kind of stethoscope, or ultrasound.

Your provider will give you clear explanations about her concerns, what to anticipate throughout the remainder of your pregnancy and what will happen next. Remember that the extra care provided is to ensure that you and your baby have the lowest possible risk for complications and that your healthcare team is prepared for any special circumstances.

But what do you do with the information that the providers give you? Women share that when they first receive the news that their baby has problems, they feel very alone. You are not the first person or family to have gone through this experience, and you do not need to go through it alone.

Remember: Knowledge is power. Having knowledge about where to find assistance is the first step to receiving the best care for you and your baby. Ask questions of your providers. Ask for their input on reliable resources, either in print or online support groups that may be appropriate.

Many hospitals have neonatal or pediatric palliative providers. Palliative care for babies and children does not necessarily indicate that they have a life-threatening condition; palliative care also becomes involved when children have life-altering conditions, such as significant health issues that may require special medical care, psychological or social support or other interventions that will enable your baby to be the best she can be. Palliative care providers can work with you from the time of diagnosis of an anticipated issue with your baby and can be the source of a significant amount of information and support before, during and after delivery.

Family and friends may provide additional layers of care and support and may be a very important part of your circle of support. Some mothers who are expecting babies who may have significant health issues ask how to discuss the information their provider has given them with family, friends and coworkers. The first step is to discuss with your partner which family members and which friends will be informed and exactly what information you will share with them. Preparing ahead of time will allow you to become more comfortable when asked the hard, but well-intentioned, question about how you and your baby are doing.

Healthcare providers, support groups, family, friends and coworkers comprise the team that can help support you and your partner during a very difficult time. Although the conversations with each can be painful, these caring individuals can also provide the support you need.

There is no right or wrong way to work through this challenging time. There is no script. Listen to those you trust, those who have gone through this before you and those who care. Even though it may not feel like it in the beginning, you will get through this.

Kathy Davis, PhD, is Director, Perinatal Support Program, University of Kansas Medical Center, Kansas City, KS.

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Written by Kathy Davis, PHD

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