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Developmental Care
Developmental Care
UNM Children's Hospital
Special Delivery Program

Rebecca Moran, MD
Medical Director, Special Delivery Program
Phone: (505) 272-8955
Fax: (505) 272-1539 

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Neonatal Palliative Care Program

What is Palliative Care? 

Palliative is a term that implies treatment that provides relief but does not cure a condition. Palliative care is related to end of life issues and comfort care. It does not mean we are withdrawing care rather we are refocusing the goals of our care. The goal becomes the best quality of life for patients and their families. Every year in the United States 15,000 babies are born for whom there is no medical treatment. They have a condition or conditions that are incompatible with a prolonged life. 

There are a variety of reasons a baby may not survive.

1) Every year thousands of babies are born with birth defects. These are commonly referred to as congenital anomalies. Congenital means present at birth. An anomaly is an abnormality or variation from the usual. Some of these congenital anomalies may be the result of a chromosomal disorder. There is limited ability to treat many chromosomal diagnoses. Also, there are thousands of chromosomal syndromes that are extremely rare but could be the causative reason for the anomaly. A congenital anomaly or chromosomal disorder that has no treatment is referred to as “lethal”. Many of these lethal anomalies may be diagnosed prenatally. Some families may elect to terminate a pregnancy for which there is no hope of survival for the fetus. However for others termination is not an option they want to pursue. They prefer to continue the pregnancy but also do not want aggressive treatment at birth. For these families, palliative care may be offered as an alternative treatment option.

2) The baby can be born at the limits of viability. Even though our neonatal care units in the United States have come a long way in the treatment of the premature infant, there are still limits to survival. The more immature they are the harder it is for them to survive. Palliative care may be an alternative treatment for a premature baby.

3) The other category for which palliative care may be an option is the newborn for who aggressive treatment is not effective. These babies have such an overwhelming illness that despite all life-sustaining efforts they are not recovering. To continue this type of treatment may prolong suffering rather than be providing an effective medical treatment. Palliative care may be the preferred treatment option.

Prenatal Diagnosis of a Lethal Anomaly:
Your obstetrician will most likely refer you to a specialist that handles high-risk pregnancies if he/she suspects a problem. Please follow this link for more information: Prenatal Diagnosis.

The Special Delivery Program consists of a group of caring professional who are here to help you every step of the way as you navigate the medical maze of information and specialties required to diagnose and care for you and your baby. A specially trained nurse coordinator arranges services and provides ongoing counseling and information, both prior to and immediately after the birth. Having a “familiar face” to turn to during this potentially traumatic time is intended to ease the process of adjustment for both the mother and family. All the specialists of UNM are in one medical complex. There is no need to drive from appointment to appointment for prenatal, or neonatal counseling or education. We provide the utmost in convenience and the optimal level of care coordination.

How does palliative care affect my baby?
The goal of palliative care is to provide physical, psychological, emotional, and spiritual comfort of the dying infant and his/her family. Palliative care will focus on the prevention and relief of physical pain and suffering for the person dying and provide support to the family who is going through this loss.

If you have a diagnosis prenatally that is incompatible with life but decide to continue the pregnancy until either labor begins spontaneously or is induced, you have the option of delivering at your community hospital or here at UNM.  For many, a relationship has been developed with the community physician and there is a comfort of having someone who you are more familiar with to assist you during this stressful time. Before delivery however, be sure to discuss with your obstetrician the plan we will work on as a team. This written plan will outline your wishes for how the baby will and will not be handled after delivery. It is sometimes very difficult for health care providers to not initiate resuscitation measures especially for a newborn in the delivery room. Sometimes it is preferable to deliver at a hospital that has specialists who are available to assess the baby after delivery to verify the prenatal diagnosis. This could avoid the potential for transport to another hospital for verification if a question arises. The issue of where to deliver should be discussed with the perinatologist and your obstetrician.

Through the special delivery program we can set up a discussion with the palliative care team at UNM and a care plan will be developed that incorporates your wishes into the plan of care for your baby. Please share this with your obstetrician and the hospital labor and delivery staff where you will be delivering your baby.

Will I be able to help care for my baby?
Yes! If that is your desire, talk with your physician and labor and delivery nurse about your desires. If your infant goes to the newborn nursery or neonatal intensive care, ask your baby’s nurse about ways to interact with and care for him/her. You will need time to eat and sleep and be alone, so even though you made plans before the baby was born, these plans are not “written in stone” and can be adjusted at any time according to your needs. If you change your mind about how you will care for your baby please let the staff know. They understand this is a very difficult and stressful time for you and your family. You will need time for your own body to physically heal from the delivery process. Do not ever feel you are expected to behave in a certain manner. Each of us responds to grief in different ways. There is no right or wrong way to behave. It is normal to ask “Why me?”, “Why my baby?”, “What did I do wrong?”. This is a normal part of the grieving process.

You can bring in pictures, small toys, booties, outfits, and blankets for your baby while he/she is in the hospital. You can take pictures, give a bath, dress, hold, sing to, and talk about your baby before and after death. IF you have any religious ceremonies you would like performed please let staff know. You could ask your own priest/pastor or we have chaplains on service who are available for our families.

Could my baby go home?
There is the potential that your baby could live beyond a few hours to a few days or more. If you are ready to go home and have the desire to take your baby home with you this can be arranged. If this looks like a possibility, we can begin to make arrangements with a Hospice home health care agency to assist you at home with end of life care for your baby. If, however, you are ready to go home and you do not desire to take your baby home those arrangements can be made also.

Practical Family Needs: The hospital has staff available to help with your needs during this difficult time. Please talk with staff if you need assistance regarding anything: i.e. financial needs, extended family needs, phone, food, pictures, spiritual support, transportation, accommodations. If you have other children and don’t know how to talk to them about their new brother/sister we have child life specialists who can either give you ideas or actually talk with and listen to your children themselves. There are grief/bereavement support groups we can get you in touch with, or provide you their number for later.

Other Considerations: Autopsy is something that will be discussed with you if not before delivery, then at or near the time of your baby’s death. This is a way to thoroughly examine the baby and help determine the exact nature of the defects that lead to your baby’s death. The chromosomes and genetics will be examined again. Sometimes there are rare genetic defects that could potentially be present in future pregnancies as well. An autopsy does not prevent you from having an open casket funeral as the hands and face are not affected by the examination. In some cases an autopsy is required. This will be discussed with you by a health care provider should this be the case.

Organ donation is rarely an option for dying infants, but we will be discussing this with you. Infrequently we may be able to use a baby’s organs for donation. Through the loss and tragedy you are suffering it provides the potential to give another family and their child the gift of life. The reason we are rarely able to use newborns organs is the law is specific about who is able to be a donor. Within the law is something known as the “Dead Donor Rule” which means only those who have been declared dead may be used to harvest organs. This definition of dead includes “brain dead”. Typically a “brain dead” person will have organs that are healthy enough to harvest and that will function well. The criteria used to define “brain death” cannot usually be applied to children under 7 days old. Even with a birth disorder that is incompatible with life or that will result in death, these babies would not fall into the criteria for persons qualified to be used for organ donation. For babies with a genetic alteration the organs also would not qualify as usable.