Hearts for Hearts' Sake News
A Bay Area Network for Families with Kids with Congenital Heart Defects
Issue II, Autumn 1997
Contents
Tricia’s Notes
Just the Facts
The past three months have been an education in figuring out how to run this type of group. The response to our first newsletter was good but not overwhelming. In the past week, though, as I’ve been handling the RSVPs for the UCSF party, we have added at least twenty-five new members. Membership to our group has more than doubled since the first newsletter.
If you have not filled in your application form to receive the newsletter at home, please do so and mail it back to me. The larger our database of families, the more likely we’ll be able to match families who have children with the more rare or complicated defects.
As yet, we do not have any permanent commitment for funding of our organization. I am now beginning to consider applying for nonprofit status so that we can more easily solicit donations. Right now, the things we could use most are a firm commitment to fund printing and mailing of the newsletter. I am receiving so many calls that I really need a second phone line devoted to our group. Many of the calls I make are to other parts of the state. These long distance call costs must be met as well.
If anyone has experience in forming nonprofit organizations, or could make suggestions about how to raise money for our group, please let me know. I am adamantly against charging a membership fee. Sometimes a child’s medical problems can make spending $10 extra a year difficult. I do not wish to exclude people who truly need us. I will keep all posted on this concern in upcoming issues.
Heart to Heart
I am very much looking forward to the upcoming UCSF reunion party. As I mentioned, I have had the good fortune to do the RSVPing for this event. I stand in awe of some of the families who have called and chatted with me about their children and their lives. As I have spoken with so many families, I have felt such a common thread that binds us together as families with “heart” kids. Each of us has fought on “the front lines” for our children.
We’ve stayed in less than luxurious accommodations, eaten lousy food, and been sleep deprived and anxiety ridden. We’ve waited in the McKesson lounge for somebody to come back and tell us our children survived surgery. And some of us have even waited only to be told that our children did not survive.
Sometimes we have faltered, other times been angry. But throughout we have fought for the lives of our children and through our love helped them fight for their own lives.
We will never have the certainty that nothing bad can happen. We know bad things do happen, but in that knowledge we see the full value of the lives of those dear to us.
The courage, wisdom, strength, love and compassion that is immediately apparent when I speak to a new mom or dad is a reminder to me that we are not alone in parenting children with heart defects. These fears and hopes, and our daily acts of bravery are common to us all.
That our beginning network has so many members who exemplify these traits is so encouraging to me. All who have contacted me so far have expressed how relieved they are that we are filling this “need” to provide support to and affirmation of each other.
In response to this growing demand, I have decided to expand our network to include the entire bay area and beyond. As our group grows we may want to turn our thoughts to having a group leader in each county, to save families the extra cost of long distance calls. If anyone is interested in becoming a “county leader,” please contact me.
Tricia Christensen
Featured Family--The Stompes
We have been on the “roller coaster ride” of having a child with a heart defect since October, 1994. At an appointment when Michael was 2 and 1/2 weeks old, his pediatrician noticed a murmur.
By that evening, we were at UCSF with Dr. Paul Stanger who was telling us our wonderful baby boy had Atrioventricular Canal with Mitral Insufficiency. After getting a slightly more detailed description of this defect, I was sure my son was going to die.
He was hospitalized for three days. In these three days, we experienced fear like we had never known, a barrage of questions and answers, and an intense education on his defect, medications, and monitoring our child at home.
I thought we would never take him to Disneyland, he would not experience Christmas and we would never hear him laugh. For these three days, I shut down emotionally. I did not want to devote any more of my heart to this child I was going to lose. I know it sounds terrible, but I have learned that it was okay.
I call this a “roller coaster ride” because we have been on a constant up-and-down since then. We were released from the hospital with an appointment to return in a month for open heart surgery.
Within one week, we discovered Michael’s medicine doses were not high enough. His “meds” were immediately increased. In another week and a half, we almost had to bump up his surgery.
We made it to the original surgery date and turned our son over to a group of people whom we had met the previous night in the O.R.. One of them actually asked why I was crying. During the surgery we received only one call from the O.R. and that was because the surgery was taking longer than expected.
We all played mindless games of cribbage and backgammon. Reading was senseless. It was too quiet and I could think too much.
Finally, Dr. Frank Hanley came to see us. He was able to repair the holes, but the valve was not completely repaired (even after three tries to build it and three times on and off the heart and lung machine). Michael would have athletic limits, would be on medication for the rest of his life, and would need at least one, possibly two, more surgeries to give him a prosthetic valve. The timing of these surgeries would be dependent on Michael’s body. Although things were not perfect, we got our baby back.
For the first year, Michael reacted positively to the meds and had even improved somewhat. It looked as though he might only need one more surgery. Then came his two year appointment. The amount of regurgitation had increased. Once again, it appears he may need a valve surgery as a child, and one later as an adult.
Our most recent appointment was thankfully another up. We are changing one of his medications which was given three times a day to a different med to be given once a day. Also, it appears that the enlargement of Michael’s heart has reduced. YEAH!
Michael has seen three Christmases, has been to Disneyland, and his laugh can still bring me to tears. He is a beautiful boy. If you do not see his scar, he does not look as though he is living with a heart defect. However, his defect is a part of our lives everyday.
I am thankful for the wonderful child we have, but I still missed his being a baby( that time filled with doctors, medicines , hospitals, etc.), and doctor appointments can still be scary and disappointing. I am fortunate to have found support through an online listserve.
Dealing with and learning about all of this has made me a stronger person and a better parent. I feel that I appreciate my children more since this “ride” has begun because I have learned just how fragile life can be.
Cheri Stompe
Did You Know?
Wash Your Hands
"Handwashing is the single most important means of preventing the spread of infection." -- US Centers for Disease Control
As school starts up again, we know that the inevitable germs and viruses will be making their way into our homes-- stuffing up our noses, giving us sore throats, bad coughs , fevers , stomach flu and all that unpleasant stuff. It is especially difficult to have children practice good hygiene , but is nonetheless important, especially for those of us who have children with complex heart problems.
It is commonly known that handwashing is the most effective method for reducing the spread of germs. This works best if the communities in which we work and go to school can cooperate.
I have spoken with several families who have met resistance from their individual schools in establishing handwashing policies, which does not make a lot of sense to me. When you consider that, at least in public schools, the school is reimbursed by the day for your child attending, it would make sense that the school would want to take an active part in keeping each child healthy and at school.
You can help by instructing your child in good handwashing techniques, and also by talking to your school or PTA about instituting a school handwashing policy.
Of particular importance is washing hands after bathroom use, before and after eating, anytime you handle raw meat, after nose blowing (or helping a child blow his/her nose), and anytime you have direct contact with the bodily fluids of another person(such as washing up after a child vomits).
I have had a few moms share with me that they have a “Wash your Hands” sign on their front door. Establishing good hygiene habits for your children may save you a few of those sniffles and fevers, and will help protect all our children whose immune systems, heart and or breathing function are just not up to dealing well with a nasty virus or flu.
For more information about the benefits and practice of handwashing, speak with your pediatrician and also check out this helpful website which has many informational links on the subject.
Tricia Christensen
Featured Practitioner
Liz Tong
As I waited and watched by the bedside of my son in the Intensive Care Nursery, I became aware of the many visits made to other parents by Liz Tong, UCSF’s Clinical Nurse Specialist in Pediatric Cardiology. Her calm professionalism, her willingness to listen and answer questions, and her commitment to educating and supporting parents instantly impressed me. I too, soon became one of the parents who benefited from her advice, guidance and straightforward approach.
Many of us who have had our “heart” children hospitalized at UCSF already know Liz well. But for those readers who have not yet met her, it is my great privilege to introduce her in the following interview, conducted via Email this past month.
Liz’ training, background and involvement in the fields of nursing and cardiology are representative of her intense commitment to her profession. She received her B.S. in 1973 from Skidmore College in New York, and completed both her M.S. and Pediatric Nurse Practitioner Certificate (with a specialty in parent-child health) in 1979 from the School of Nursing at the University of Colorado, Denver. She is board certified by the National Board of Pediatric Nurse Associates and Practitioners, and in 1994 became a Fellow of the American Academy of Nursing. After working in varied medical positions from 1973 on, she began her work at UCSF in 1982. Next month marks her fifteenth year in this position.
As a clinical nurse specialist, Liz has a number of varied responsibilities. She educates both families and the nursing staff about heart disease in children, coordinates care throughout a child’s hospital stay, speaks with families who are awaiting surgeries and gives tours of the facilities when requested.
Additionally, she arranges for outpatient medical supplies and care for discharged patients, orients new fellows, sends discharge summaries to referring doctors and presents outreach talks to nursing staffs at hospitals who refer patients to UCSF.
Liz also holds a non-salaried faculty position in the UCSF School of Nursing. Her community and volunteer efforts, presentations, awards and research projects are too numerous to mention fully here. Most recently she worked on the Board of Directors for the San Francisco American Heart Association, and is currently working as a professional advisor to organizations providing support to families with kids with CHDs.
Liz shared with me that she has always been interested in pediatric cardiology. She enjoys the logic of this specialty. She writes: “If you understand the normal blood flow through the heart, the ‘defects’ are easier to understand.... It is also an exciting field because we have come such a long way in improving the longevity and quality of life for these kids.”
Most of us know how great the stress is when our children are first diagnosed with a heart condition, or are facing or recovering from a surgery. Liz says that in attempting to educate and support new parents, she first tries to determine what worries the parents most. Sometimes this involves correcting misinformation.
In one poignant example, Liz related to me the story of a mother who was overwhelmed by guilt because of her child’s heart defects. The mother believed, mistakenly, that her child’s condition had been caused by the fact that she and her husband had argued frequently while she was pregnant.
That guilt made it difficult for the mother to learn what was needed for caring for her child. Helping the mother to see that she was not responsible for her child’s illness was the path toward helping her understand what her child would require.
Liz writes: “I also try to help parents see the ‘normal’ or ‘well’ aspects of their child, what they can do as opposed to what they cannot do, and how all children have the need for love, discipline, social interaction, no matter what their physical condition is. In other words, I try to put the heart disease in context through education and support, so parents are not so afraid, and are able to see their child as a child first.”
Of course, an occupation like this must have its difficult moments. Being unable to help a child further or when a child dies is admittedly the hardest part of Liz’ work. Yet she finds much in her work to enjoy as well, such as when she sees a child who after a surgery is able to do things not possible before, who has a “new lease on life.”
Liz would like to see pediatric cardiology focus more research on the issues surrounding quality of life in adolescents and young adults with CHDs. Since great strides have been made in improving the length of life for many cardiology patients, she would like these patients to be researched from both a neurological and social approach. In other words, how are these adults doing?
Liz asks “What can we as health professionals do to facilitate healthy psychological and social development?” And she is beginning research on adults and adolescents in an attempt to answer this and other questions. Doubtless, this research will be as helpful to parents as it is to professionals as we aid our children in maturing and at last in taking responsibility for maintaining their own health as adults.
In the close of our interview, I asked Liz what general advice she could give parents to help them care for both the social and health needs of their “heart” kids. From a medical standpoint, she suggests writing down questions we have for our children’s doctors when they occur, and mentioning it to our doctors when we receive conflicting advice (as from a well-meaning friend or relative, but from a physician as well). She further advises parents to keep track of medications and call several days before a prescription runs out to ask for a refill.
From a social perspective, Liz writes: “Let your child experience things other children his or her age do within the activity guidelines given by your cardiologist. Remember, this is a child first, one who happens to have heart disease, but is still part of your family and thus, should be incorporated into your family routines. There is life after the hospital.... Trust yourselves as parents. As your child grows, you will become the expert in his or her care and will know him or her better than anyone else.”
Tricia Christensen
Disclaimer
It is never the intent of this newsletter to substitute for regular medical care or advice from your children’s doctors. Always , Always consult your doctor about any medical procedure, treatment or suggestion that you might read about in this publication or in any other informational publication. No advice offered here can in any way substitute for the individualized care your child receives from his or her physicians.
Acknowledgments
We wish to thank the Santa Rosa chapter of the American Heart Association for publishing our Summer 1997 newsletter, and to the UCSF department of Pediatric Cardiology for paying for the mailing costs of the Summer newsletter.
Graphics Design by Lolis
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