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Patient Center: Preparing for Being a Fetal Surgery Patient

Less than 10% of our patients require some type of Fetal Surgery. If our team of experts determines you are a candidate for Fetal Surgery, please read through this next section for more information and next steps.

Being a fetal surgery patient is a unique experience. Our team will be available to assist you and your family at every juncture. We have some information to prepare you for your hospitalization.

• Caregiver Support
• Preparing Yourself Emotionally
• Travel & Packing Considerations
• Lodging
• Transportation Options While in San Francisco
  • Having a Car & Parking
  • Choosing Not to Have a Car
  • Car Sharing Options

Caregiver Support

It is extremely important to have someone close to you stay with you for the entire time you are in San Francisco. For a period of time after fetal surgery you will be on bed rest to prevent preterm labor. During that time you will be unable to totally care for yourself and will need others to help you. This is a stressful time and you will need someone you can depend on and trust.

The Roles and Responsibilities of Your Caregiver

The caregiver becomes a life-line for moms on strict bed rest after surgery. Once discharged from the hospital, the caregiver must take the place of nurses in providing physical assistance. Additionally, they must be able to do all errands such as grocery shopping, filling prescriptions, and take care of meals, laundry, etc.

Of equal importance is the emotional support required of the caregiver. This requires a certain level of maturity and compassion. The medical uncertainty and daily hassles can be stressful, and the confining nature of surgical recovery and bed rest can be frustrating for independent moms. Caregivers must often offer an empathetic ear, a supportive hug, and probably most importantly, a sense of humor in the face of a roller coaster of emotional experiences.

Preparing Yourself Emotionally

There are several things you can do beforehand to prepare for the emotional experience of your surgery. The list below has been compiled based on suggestions offered by our fetal surgery patients:

• Be knowledgeable about your surgery:
  • Never, ever hesitate to ask questions of our staff, and don't be afraid to ask again if you don't understand.
  • You may be overwhelmed by everything that is happening, so it may be helpful to write out questions and concerns beforehand.
  • Read all the info presented on our website thoroughly and/or ask for copies of our available literature
  • When appropriate, it may sometimes be possible to communicate with another fetal surgery parent about their experiences and preparations. Keep in mind that everyone's experiences are individual and your specific circumstances may differ. If you are interested, discuss this possibility with the nurse case manager, or social worker.
• Maintain solid connections with your social and emotional support network (bring your address book, stationary, a phone calling card or cell phone)
• You might find it comforting to document your experiences (keep a written journal, tape record yourself, and take pictures or video)
• The confining nature of recovery can be dull so bring something to keep you occupied (books, music player, laptop computer, games, instructional cds, sketchbook, and low activity hobbies such as knitting or origami)
• It may also help to bring a couple small things that serve to comfort and remind you of what gives your life meaning (pictures of your family and friends, religious or spiritual texts, inspirational poetry, or your favorite keepsake)

Travel & Packing Considerations

Depending on the extent of your treatment you may have to prepare yourself for an extended stay in San Francisco. If you and your caregiver are traveling here from another city or state, there are some important things to consider before you leave your home:

• Make arrangements for the care of any other children you may have.
• Arrange for house-sitting or other means to handle routine yard work, mail collection, or pet care.
• Setup a system for timely bill payment (bring a check book and explore autopay services or online banking options).
• You may find that there is not a local branch of your home banking institution. Please check with your bank to explore your banking options: you may be able to handle all your needs through online banking or other means. Alternately, it may be necessary for you to open a separate bank account (please note that if you chose to open a bank account in San Francisco you will need two forms of personal id).

Pack practically:

• You may be moved from one room to another and thus will have to transport all your belongings (wheeled luggage can be very useful).
• Make sure you check the forecast—San Francisco winters can be cold and rainy, and our summers can be chilly. Comfortable layered clothing and jackets are useful anytime of year.
• Bringing comfortable clothes for wearing in your room such as slip-on shoes, pajamas, and bathrobe.
• Remember to save space in your luggage for anything which can help support you emotionally (see "Preparing Yourself Emotionally" above for suggestions).

Lodging

It is the responsibility of the family to provide for their own lodging. The UCSF Fetal Treatment Center cannot pay for lodging expense, but some insurance plans will reimburse patients for their travel and lodging expenses.

The UCSF website has compiled a list of short term lodging options which can assist you in planning your travel to San Francisco. Please ask our office staff if you have any questions about these arrangements.

Unfortunately neither the San Francisco Ronald McDonald House nor the Koret Family House accepts families during the fetal evaluation process. After your surgery is over, accommodations might be available at either location. However, space is very limited, and their rooms are usually reserved first for families with seriously ill children.

Transportation Options While in San Francisco

Having a Car

There are definite pros and cons to having a car while in San Francisco. The main drawbacks are the high cost of parking and the often congested and confusing San Francisco streets. On the other hand, having a car helps the caregiver access food and supplies more easily and may be more comforting to have in getting to the hospital for appointments or delivery (as opposed to the shuttle or a taxi).

If you don't see yourself needing a car for the entire length of your stay, you might want to look into San Francisco's many car share options (see "Car Sharing Options" below)

Parking

Street parking is often hard to find in San Francisco, and it often requires more walking than is recommended for fetal surgery moms. Parking at UCSF Medical Center can be up to $22/day.

Choosing Not to Have a Car

It is possible to come to San Francisco and not use a car during your stay. San Francisco has an extensive public transit system and several taxi services. Additionally, there are free UCSF shuttles that go to Mt. Zion Hospital and other proximal locations—it runs regularly and often from morning to late evening. For those on bed rest/ limited mobility, the shuttle is wheelchair accessible. A wheelchair may be available on loan to you from the Fetal Treatment Center for use with follow up appointments at the hospital and other limited transporting.

Car Sharing Options

If you only want to use a car for an hour here or there for errands, you might want to look into car share options such as Zip Car, City Car Share, or Flexcar. All three companies have cars available in locations all around San Francisco including near UCSF (Zipcar and City Car Share has cars available directly in the UCSF parking garage).

Read Further: Your Fetal Surgery