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There are many ways you can help children and their families get the care they need.
The AFCC's experience in fetal care has shown that the earlier an anomaly can be correctly diagnosed, the greater a baby's chances of experiencing optimal development and health. Using advanced diagnostic tools, ground-breaking surgical and medical treatments, and supportive care, fetal specialists at Boston Children's Hospital are increasing the chances of survival and the quality of life for many newborns. We strive to provide as much helpful information that relates to the diagnosis as possible so each family can make the most informed decision.
At every step of the way, the AFCC team is committed to open, honest communication with families and compassionate support. The Cardiac Intensive Care Unit (CICU) is currently located on 8 south, the eighth floor of the main building at Boston Children's Hospital. We have 24 beds dedicated to the care of infants and children with congenital or acquired heart disease who need continuous monitoring.
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Most new patients come to the AFCC when routine tests have indicated a problem with your unborn fetus. You may have been referred by your physician, or you can contact our center directly at 617-355-3896 or 1-866-FETALCARE, or by requesting an appointment online.
We understand the anxiety many families feel when contacting us. From the first telephone conversation, we strive to provide helpful, informative and compassionate support. We want to know your concerns and find out how much information you have about your fetus's health. We'll answer your questions and share our knowledge based on our experience and the most current data.
During the initial telephone intake, our administrative associate will obtain relevant information from you including referring physician and insurance information. You or your obstetrician will be asked to fax medical information to us for review: 617-730-0302.
A member of the AFCC team will review all information and contact you to obtain additional history, assess your understanding of the health problem, answer your questions and offer support and reassurance. Additionally, they will coordinate all appropriate diagnostic testing and counseling sessions.
Every attempt will be made to schedule imaging studies and appointments in a timely fashion to best meet the needs of our patients during this difficult time. Some appointments will require special diagnostic testing including ultrasound, MRI, or echocardiogram based on the fetal diagnosis, or suspected diagnosis.
Many families that come to the Advanced Fetal Care Center have questions related to available resources. A new online photo tour will illustrate some of the resources available to you and what your experience with us will be like. Additionally, services for Patients and Families provide information to help plan your visit.
Use these quick links for specific questions you may have:
Many of our patients at the Advanced Fetal Care Center go on to deliver their babies at Brigham and Women's Hospital or Beth Israel Deaconess Medical Center, both of which are located right by Boston Children's Hospital. This often brings up a number of questions for patients and their families, especially if they do not live locally:
Where will you stay when your baby is in the hospital? How will you visit from the delivering hospital? What resources are available to your family to assist with the costs of being here?
The AFCC social worker is available to discuss these concerns and options with you, as well as to set up a pre-delivery appointment to see the hospital unit your baby will be admitted to, often our:
At this time you will also visit the Center for Families and be given a journal compiled by the AFCC and the Center for Families to help you organize and take notes related to the information you're being given about your baby. It also includes information to help orient you to the hospital.
Many of our patients are in different phases of their pregnancy and faced with a diverse range of medical diagnoses, decisions and concerns. It is not unusual that our patients and their family members are under significant emotional stress.
Maybe you have just heard about a potential diagnosis and are attempting to learn more? Maybe you have been counseled extensively and are making decisions about your pregnancy? Maybe you are anticipating a loss or are fearful of the prognosis? Maybe you are considering treatment options and/or awaiting a delivery?
The emotional stress related to the anxiety, fear, anger, sadness, and overall grief that your pregnancy has been irrevocably changed can be exhausting physically, mentally and emotionally.
Here are some ideas to help you get through this period of time. Please use those that may be helpful to you and disregard the others:
Gather information from reliable sources.
Write down your concerns and questions.
Talk with someone you trust.
Take care of yourself.
Explore what's helped you through stressful and scary times in the past and see if you can apply those things now.
Try relaxation techniques.
Journal your thoughts and emotions.
Which patients are admitted to the Cardiac Intensive Care Unit?
Children with heart conditions who need continuous monitoring and frequent assessments are admitted to the Cardiac Intensive Care Unit. While most of the patients are admitted after heart surgery, we also care for patients with non-heart related conditions.
What does the CICU look like?
While the CICU is an area of constant activity, we strive to provide a comforting environment for families, who we know are going through a stressful time.
All of the bed spaces offer privacy for patients and their families. The bed space your child occupies in the unit may change from time to time due to the needs of other patients.
The parent area contains a sleep bench that may be used as a bed for one parent, a closet, a small safe for valuables and a phone for outgoing and incoming calls. When you are not in the room, messages from incoming callers may be left on voicemail for you.
Visiting the CICU
Parents are welcome to stay with their child in the CICU 24 hours a day. We ask that you wear a parent ID badge, which you can get at the reception desk in the main lobby. Siblings of any age are also welcome. All siblings under age 12 must check in at the main lobby information desk to be screened for illness and then get a Boston Children’s sticker to wear before entering the unit. Siblings’ sleep accommodations are not available in the hospital. Our resource specialist is available to assist families who may require additional accommodations.
To ensure the privacy of all our patients, we ask that you stop at the CICU front desk each time you visit. The receptionist will check your parent ID badge and let your child's nurse know you are here. The unit is very large. Signs are posted to help you and we are happy to escort you to your child's bed space.
Since this is an intensive care unit, visitors may be limited. We ask that all visitors be accompanied by a parent.
We encourage you to bring in stuffed animals, blankets, music boxes or pictures for your child. Please label all personal property with your child's name to prevent items from being misplaced. Flowers are not permitted in patient rooms.
Cell phones and wireless computers may not be used in the CICU. These items may interfere with some of our sophisticated monitoring in the CICU.
How can I contact the CICU and find out about my child while I'm away?
If you are away from the hospital, you can contact the reception desk (617-355-8087) to be connected with your child's nurse.
We are happy to provide you with information regarding your child's condition any time, 24 hours a day. We encourage you to ask questions at any time. You may find it helpful to keep a notebook to write down information you receive and keep a list of questions that come up. We are here to help you and your child, and we will answer all your questions honestly and to the best of our ability.
How do I make and receive personal phone calls?
All incoming personal phone calls should be directed to the phone in your child's room. Instructions on the usage of the phones are posted in your child's room.
Who will be given information about my child?
To protect your child's privacy, we only provide information to parents, guardians and primary care providers. We ask that other family members and friends contact you for information about your child.
What will my child's routine be while in the CICU?
Because routines differ by the age and diagnosis of each child, you may discuss the daily plan for your child with your child's nurse and physician. Your nurse will explain tests and procedures and provide frequent updates on your child's condition. Many diagnostic tests are performed at the bedside.
Transfer from the CICU
Once your child has recovered and is in a stable condition, you will be transferred to the Cardiology Unit on the 8th floor, which is adjacent to the CICU.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”