How to prepare kids for a new sibling with a medical condition

Photo shows a brother hugging his newborn sister/Getty Images
Little brother hugging his newborn sister
Introducing a medically complex sibling can be challenging, but there are things you can do to help smooth the transition.

Hemolytic disease of the fetus and newborn (HDFN) rarely occurs in first pregnancies. Typically, the mother becomes sensitizedSensitization The process by which a mother’s immune system becomes “primed” to recognize and attack fetal red blood cells carrying incompatible antigens. during the first pregnancy, but may not insubsequent pregnancies. This means that the HDFN-affected baby is often welcomed into the family by his/her sibling(s).

Bringing home a new baby is a special time for the whole family, but introducing a medically complex sibling can be uniquely challenging, requiring careful preparation.

Hemolytic disease of the fetus and newborn (HDFN) is an immune-mediated red blood cell (RBC) disorder that occurs when a baby’s RBCs break down quickly, which is called hemolysis. HDFN is caused by a mismatch between a mother’s and her baby’s blood type (A, B, AB, or O) or Rhesus (RhRh factor A protein or antigen found on red blood cells. When an Rh-negative mother carries an Rh-positive fetus, her immune system may make antibodies that attack the fetus' red blood cells.) factor (Rh-positiveRh-Positive A blood type trait that means your red blood cells have the Rh(D) antigen. or Rh-negativeRh-Negative A blood type trait that means your red blood cells lack the Rh(D) antigen.) during pregnancy. Numerous antibodiesAntibody A protein made by the immune system that recognizes and attacks foreign substances, such as bacteria, or in HDFN, fetal red blood cells carrying incompatible antigens. to RBC antigensAntibody A protein made by the immune system that recognizes and attacks foreign substances, such as bacteria, or in HDFN, fetal red blood cells carrying incompatible antigens. can be linked to HDFN, such as those from the ABO and Rh blood groupBlood group A classification of blood based on inherited markers found on red blood cells. The ABO and Rh blood groups are most common in HDFN. systems.

Start preparing your children early

Don’t leave it to the last minute to start the conversation. As soon as HDFN is identified as a potential risk during pregnancy and then, if the fetus is positively diagnosed, the level of prenatal care is intensified. More hospital visits, additional testing and any additional preparations you make will create the opportunity to raise awareness within the family.

Of course, the age of your children will influence how you broach the topic. It may be sufficient just to mention that the new baby needs extra care now, during pregnancy, but also post-delivery. Older children can be more involved in practical tasks to welcome their sibling. Throughout your pregnancy, encourage them to feel protective; help them grow into the role of the big brother or sister.  

Delivery and neonatal HDFN treatment

Before giving birth, prepare your children for the next steps. Explain that you’ll most likely need to stay in hospital after the birth, while you rest. If the new baby is born prematurely and/or has HDFN symptoms, he/she will require special care in the neonatal intensive care unit (NICU).

The family will likely be able to visit you both in visiting hours, around the baby’s medical treatment schedule. Time spent together at the hospital will help the siblings bond. The older children will also feel that they are involved in caring for their little brother or sister.

Ongoing care

The length of the hospital stay for an HDFN-affected newborn depends on the severity of HDFN symptoms. In many cases, hospital treatment is only necessary for a matter of days, with little to no ongoing care necessary. Once discharged, follow up care may be required at home or on day visits to the hospital.

Residual jaundiceJaundice A common symptom of HDFN, jaundice is caused by excess bilirubin and is characterized by a yellow tint to the skin or eyes. may mean the new baby is sleepy, floppy and fussy when feeding. Quality time between siblings might therefore take the form of gentle cuddles until the baby begins to thrive.

While long-term consequences are uncommon, rare complications of severe jaundice may include deafness, brain damage and cerebral palsy. Preparing your children for the effect of such serious outcomes will require professional guidance from your healthcare team.