Caring for a Baby With a Genetic Disease

As the family grapples with the serious illness and perhaps imminent death of the baby, the infant must also cope with the consequences of her ill health. An infant's need to be cuddled is just as great as her requirement for food. She thrives on consistent care from her parents. A baby quickly comes to know and love these special people.

Separations, such as during hospitalizations, can be very distressing for an infant. Parents of children with chronic diseases can sometimes arrange to care for the child at home with or without the assistance of a nurse. Should parents decide to bring their dying baby home, many communities have resources to assist them during this period (such as visiting nurses, home care nursing, and hospice care).

During necessary hospitalizations, most hospitals allow parents unrestricted visiting privileges and often provide facilities for parents to room-in with the child. This gives parents the opportunity to participate in the care of their sick baby. Caution must be exercised not to spend so much time with the ill child that the well-being of the parents and other family members suffers.

To help you cope with an ill or dying baby, do the following:

  • Tell the physician and other hospital staff about your needs and your baby's needs.
  • Provide the hospitalized baby with her favorite toys and food. Display pictures of the family where she can see them. The entire family should visit the baby as often as is feasible.
  • Obtain counseling with a skilled professional. Ask your doctor or contact the hospital for a referral.
  • Read about the subject. Most bookstores and libraries have many books for all age groups about coping with the illness or death of a loved one.
  • Search out support groups, which exist for many types of chronic illnesses of childhood. There are also support groups to help parents adjust to the death of an infant.
  • Allow siblings to visit the baby in the hospital.
  • Attending funeral services that are brief and not morbid help all family members to understand and accept the finality of their loss.
  • Keep lines of communication open between family members. Families that can share their feelings and console each other learn that even an enormous loss can be mastered.

However, it is important for new parents to keep in mind that this is the worst-case scenario. The overwhelming majority of children are born health or with only minor genetic fluctuations that are easily corrected. While it is a good idea to stay informed to all of the possibilities, there is also no reason to focus on the negative.