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Fetal Surgery Parent's Guide -- A Patient's Perspective
By Stacey Hardy-Desmond, social worker and fetal surgery mom
The Decision To Have Fetal Surgery
Whether through choice, or as a participant in a fetal surgery study, the decision to have fetal surgery marks your membership among an exclusive group of parents. There is no doubt that to reach this point, you have experienced a spectrum of emotions and feelings that you never anticipated having. You may feel isolated, helpless, or as though others cannot fully understand your situation. Be assured that there are resources to help you through this life-changing experience.
The goal of this piece is to provide some additional guidance and information from a parent's point of view. The information included here is designed to help you through the emotional and practical aspects of the fetal surgery process. Common questions and concerns of perspective fetal surgery parents will be addressed, as well as ways of obtaining further information and the kind of support so critical to making the most of your fetal surgery journey.
What About Work?
Aside from the health of your unborn child, financial concerns may be among your earliest considerations with fetal surgery. In some cases, time commitments for the initial surgery, extended bed rest if necessary, and follow up treatment of your child can be quite lengthy. Work and financial matters may become even more of a concern if you are traveling from out of town or another state. While it cannot always be counted on, in some cases study participants may be eligible for limited financial assistance through surgery research grants. These funds will not cover wages from missed work, but may help with some surgery associated expenses. You are advised to consult with a nurse case manager regarding availability and eligibility for these funds.
It is not always possible for fetal surgery parents to go without working for extended periods of time, and as a result some have come up with creative and innovative ways of dealing with their work situations and maintaining some income. If your financial resources are limited, here are some work ideas:
Immediately contact your human resources department to ascertain your sick, vacation, comp or other off time balances. At some work sites, sick time can be "donated" to you by co-workers under these special circumstances. Explore doing work through technology -- teleconferencing, Internet or computer work. Depending on the kind of work you do, some employers may be willing to pay you for days worked from a remote location. Investigate ways in which others work at home and use some of these approaches in negotiating with your employer. One example is to accept a temporary assignment as an independent contractor. While this is not an option during mandated bed rest, once you are permitted to increase your mobility, one option may be obtaining local temporary employment. Collaborate with co-workers to propose work-sharing alternatives.
The Family Leave Act
It will be important to understand how your employer interprets the Family Leave Act (FLA), which serves to safeguard your job under certain medical circumstances. Generally, employers may allow up to 12 weeks medical leave without pay. Typically, you will need to submit some basic paperwork regarding the nature of the problem and your physical limitations, or those of your partner. The Fetal Treatment Team is very helpful in assisting with this documentation which you can obtain from your employer.
State Disability Insurance
State Disability Insurance (SDI) provides benefits (proportional to your wages) to eligible workers who experience a qualifying disability, including disabilities related to pregnancy and childbirth. Specific steps toward applying for and obtaining SDI benefits vary by state. Therefore, if you choose to pursue this option, you are advised to consult with your employer's human resource department and/or your state's Employment Development Department.
If you are employed, you may in fact be pleasantly surprised how supportive your employers and/or co-workers may be when they understand your circumstances and when you come to them with viable alternatives.
What and How to Pack
If you are traveling from another part of the country, it is important to consider the time of year and the San Francisco climate. The summers can be particularly cold, and packing layered clothing is a good idea throughout the year. You have to balance bringing what you need and want with what is manageable, portable and practical. What follows is a list of items compiled by fetal surgery parents.
Clothing:
- Warm clothing that is comfortable, loose-fitting and can be layered
- Coat or jacket
- Loose-fitting nightgowns or pajamas
- Bathrobe
- Comfortable slip-on shoes
Documenting your experiences:
- Camera and/or video camera
- Film
- Journal
Staying in contact with family and friends:
- Address book
- Stationary
- Thank you notes or cards
- Stamps
- Phone calling cards
- Mobile phone
Other Items:
- Use luggage with rollers and/or rolling luggage carrier, luggage straps and bungee chords
- Umbrella (depending on time of year)
- Laptop computer
- Computer discs
- Computer games
- Books
- Inspirational, spiritual or religious readings
- Things to do, such as cross-stitch, knitting and other hobbies
- Small tape recorder
- Relaxation tapes, instructional (e.g. foreign language) tapes, blank tapes (record baby's heart beat)
- Pictures of family and friends
Pack carefully. Remember that you may need to move or transport all of your belongings if you need to be moved from one hospital room to another, or if discharged to the Ronald McDonald House. But do not neglect your psychological needs; bring enough of the things that help you feel physically and emotionally comfortable. Also, if you have arranged to do work remotely, bring the materials that you need, or better yet, ask if you job will be willing to ship needed work materials to you at their expense.
Where to Stay
The Ronald McDonald House provides a wonderful post-surgical housing option for fetal surgery parents and for once the baby is born. Basic qualifications include a referral from the Fetal Treatment Center social worker, home residence more than 50 miles away from the hospital, and fetal surgery or a critically ill child younger than 18 years of age.
The Ronald McDonald House requests a small payment of $10 a night. Compared with the prohibitive rates of local hotels that can range from $85 to $150 per night for basic rooms, this is a more viable choice for most families. If the Ronald McDonald House fee would cause financial hardship for your family, a reduction can be requested. Consult with Ronald McDonald House staff upon your arrival there about payment alternatives.
The Ronald McDonald House program and staff aim to reduce some of the day-to-day concerns so that you are more able to focus on the needs of your child. Their supplies may vary, but they are generally able to offer a few basic hygiene supplies, towels, linen, laundry facilities and laundry supplies, and some "help yourself" food staples. Usually, strollers and small shopping carts are available on loan. Area maps and take out menus are also readily available.
Rooms may have their own or shared bathrooms and are equipped with a direct telephone line, an answering machine, beds, a television and desk. Rooms in the main house are a cross between a hotel room and a dorm room. Other rooms are located on a wing of the UCSF Medical Center at Mount Zion, across the street from the main house, and are more like hospital rooms. There is a community kitchen, and families are assigned a locking pantry space along with refrigerator and freezer space. All residents are expected to keep their room clean and to clean up after themselves when using common areas as there is no maid service. Residents are responsible for their own meals (the nearest supermarket is less than a mile away), but occasionally, dinners are presented by volunteers.
One of the less obvious benefits of being at the Ronald McDonald House is the ability to talk and share with other parents. Some may have undergone similar procedures, others may be facing a range of other medical conditions with their children, but families in residence at Ronald McDonald House tend to be supportive of each other and are often open to sharing helpful and valuable information. The staff, although not care takers or counselors, are willing to help make your stay as comfortable as possible and also serve as excellent resources -- particularly regarding the surrounding community and where to find what.
Transportation and Parking
There are definite pros and cons to having a car while in San Francisco and while staying at the Ronald McDonald House. Prices vary, but parking at UCSF Medical Center can range from $11.50 to $18 a day. Some locals know of street parking locations outside of the mostly residential two-hour parking around the hospital, but these are limited and may require an amount of walking that is beyond what is recommended for fetal surgery moms.
There are UCSF shuttles that go to Mount Zion (near the Ronald McDonald House) and other proximal locations. It is free and runs regularly, often from morning to late evening (schedules are available). For those on bed rest or 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.
The Ronald McDonald House can offer a parking pass for a lot near the house depending on the availability of spaces. When this was written, the fee for this pass was $5 a month, and it may be particularly useful for accommodating visitors with vehicles.
It is a matter of personal preference whether to have your own car or not. 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 care giver more easily access food and supplies and may provide a more comforting way of getting to and from the hospital for appointments or delivery (as opposed to the shuttle or a taxi).
The Roles and Responsibilities of Your Caregiver
You already may have been advised that in having fetal surgery, you must have a caregiver accompany you. Whether a spouse, partner, family member or close friend, the importance of the caregiver's participation in the fetal surgery process cannot be over emphasized.
From a practical standpoint, the caregiver becomes a lifeline 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 and filling prescriptions. They must prepare meals, do laundry, get things and put them away -- all of the activities that facilitate one's day-to-day functioning. This can be somewhat physically demanding and is not recommended for someone who themselves may be physically limited or disorganized.
From another point of view, the caregiver, who must spend significant amounts of time with the mom who has undergone fetal surgery, must be emotionally available and supportive. This requires a certain level of maturity and compassion. Surgery and the weeks that follow can be particularly confining for moms who see themselves as independent, and who must suddenly contend with the helpless feelings of needing to depend on others. This coupled with the uncertainty of the medical outcome of many fetal surgery procedures and the usual daily hassles make for a potentially stressful time. 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.
Other Practical Considerations for Fetal Surgery Parents
Child care arrangements for other children Arrangements for house sitting or residence maintenance while away Care for pets Clarifying addresses so that correspondences can be efficiently sent to you Making arrangements for the timely payment of regular bills (explore "auto pay" options, bring checkbook) When in the hospital at UCSF, ask about:
- The video lending library and VCR
- The alternative menu -- offers kosher, vegetarian, ethnic and other selections beyond the regular menu
- The patient pantry (juices, ice, microwave)
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 from those of other fetal surgery mom's, but it still may be helpful to consult with someone who has gone through fetal surgery as an adjunct to the more formal information available from Fetal Treatment Center staff. Discuss this possibility with the nurse case manager or social worker. Get information. Never, ever hesitate to ask questions of the Fetal Treatment Center staff or other professionals managing your care. Because of all that you may be going through physically and emotionally, it may be helpful at times to write out questions and concerns before consulting with staff. Make sure that you fully understand the feedback you are receiving. The Fetal Treatment Center staff members are invested in you being fully informed about the fetal surgery and are very responsive to inquiries. Ask for copies of available literature on fetal surgery and read these materials thoroughly. Maintain solid connections with your social and emotional support network.
Information Resources
Ronald McDonald House of San Francisco
1640 Scott St.
San Francisco, CA 94115
www.ronaldhouse-sf.org
Fetal Treatment Center
513 Parnassus Ave.
HSW 1601, Box 0570
San Francisco, CA 94143-0570
(800) RX-Fetus, (415) 476-0445
fetus@surgery.ucsf.edu
UCSF Medical Center - Labor and Delivery
Floor 15 Long
505 Parnassus
San Francisco, CA 94143
Nurse's Station: (415) 353-1787
The Fetal Treatment Center at UCSF Children's Hospital is a world leader in diagnosing and treating birth defects, using advanced therapies including fetal surgery.
More Information:
Reviewed by health care specialists at UCSF Children's Hospital.
Last updated May 8, 2007
This information is for educational purposes only and is not intended to replace the advice of your doctor or health care provider. We encourage you to discuss with your doctor any questions or concerns you may have.
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