Keeping the Balance amongst Siblings

It’s one of those challenges that all families affected by a Congenital Heart Defects (CHD) face…how to keep the balance amongst siblings. There are so many issues that come into play when considering how to treat your children who are not afflicted with a CHD. There’s a fine line – you don’t want to burden them with too many responsibilities or make them feel less important, yet you also don’t want to spoil them to overcompensate for the fact that so much attention is paid to their ill sibling. How do you handle it? Where do you turn for advice? We’ve compiled some tips and advice that was gathered from other parents, online resources, as well as publications by child psychologists.

· While it is very important that all siblings be informed about your family’s specific CHD situation, it’s important to set an example that it’s not something we have to dwell on every day. All children want to live as normal a life as possible. So, by educating your children about CHD rather than making it a daily focus, you’ll be off to a great start in establishing a balance amongst your children and your entire family as well.

· Allow your children who do not have a CHD to choose a specific responsibility in order to empower them. This will let them know that you value their help yet you won’t be burdening them with too many expectations. For example, maybe a sibling can simply be a reading buddy for your child with a CHD.

· Remember to let all your children know how much you appreciate their help. If they happen to be too young to actually be of any significant help at the moment, you can always tell them how much you appreciate their understanding and patience when you have to assist or focus on their sibling who is sick.

· Although it can be tempting for many parents, avoid spoiling your other children in an effort to make up for the attention you feel you’re giving your child with a CHD. Spoiling them can include giving an abundance of material items, too much attention, or even treating them with kid gloves as though they’re too fragile to handle your family’s situation. They will grow up with a sense of entitlement or even resentment. Kids are smart – they will eventually realize why you’re spoiling them and will in many cases feel like they didn’t truly earn the things you gave them or the over-attentiveness you showed them.

· Encourage your children to express their feelings. Talking can be such a powerful tool when it comes to children. It doesn’t matter their age – you can always adjust your conversations by using developmentally appropriate language to answer their questions or respond to their statements. Be truthful yet simple and to the point with your children. One story we came across involved an older sibling who asked why his little brother was sick; he thought he did something wrong. In this situation, it was suggested that the parents have a real conversation with explanations that were simple and truthful. For example, you might say “You didn’t do anything wrong; your brother just has a special heart. We’re all special in our own ways.” Sometimes, it may seem impossible to discuss CHD related topics with your children; however, it’s much wiser to at least let them know you heard them and are willing to try a discussion rather than simply changing the subject.

At the end of each day, this whole issue does tend to feel like quite the balancing act. However, it is so important to make a conscious effort to remember to think about how you’re treating all your children. Do they feel equally important? Is one child feeling neglected or perhaps, on the other hand, that you’re actually being over-attentive to him/her? These are questions we can stop and ask ourselves each day to try to keep that balance and ensure that our children sense that balance amongst their sibling relationships.

Why Me but Why Not Me!

Why Me? But Why Not Me!
By Mom 2 Andre

Why me? If I only knew how life would have turned out when the day I learnt I was pregnant. I was told on numerous occasions that life would not be the same when you have a child. I accepted it with a smile because I believed that God blessed my life. I was looking forward to the time my little bundle of joy would be here, counting the days on the calendar, earmarking all the doctors’ appointments and ultrasounds that came along with the journey.

Nothing would have ever prepared me for February 12th, 2008. It was a phone call from my ob/gyn, telling me that my little one had an enlarged heart. I remember feeling numb all over, it was a feeling of total despair. What did I do wrong? How could I fix this? What did I do to deserve this. Why me?

Nothing would have prepared me for the birth of my first born. I was induced at 39 weeks of gestation. “It’s a boy!” everyone cried to me. “It’s a boy! Congratulations!” they said to me. I heard my little boy’s first cry; yes, the one I longed to hear from the time I knew I was pregnant. I cried with my husband, and he cried with me. We named him Andre Jacques. Minutes later, my eyes laid on my little treasure, head covered with his little hat, and tightly wrapped in the hospital receiving blanket. This moment only lasted for a few seconds. It was not fair, I thought. He was rushed to NICU, in case something was to happen with his heart. I suddenly felt sad. I wanted to be the first one to hold him like a new mother could. I was his mother after all. No one should not have been allowed to hold before I did. However, because of my c-section, I was only allowed to hold my son 12 hours later. I was mad. Why me?

Nothing would have prepared us for Andre’s first heart procedure, known as valvoplasty. We were waiting to see what happened, how he would develop during the first week of his life. At 6 weeks old, we were at the hospital for a routine echocardiogram. The next thing we knew, I was carrying Andre half dressed from one building to another. I was walking with tears rolling down my eyes. I saw people looking at me, wondering why I was crying. I finally reached the PICU. I laid Andre down on his bed. I stared at him from one corner of the room while nurses frantically hooked his little body to monitors. He looked very pale; his lips had no color. The next day, he was taken away from me for his first heart procedure, not knowing if I were to hold him ever again. His heart was in a bad shape. Why me?

Nothing would have prepared me for the phone call that I received from the cardiologist days later. He told me that the valvoplasty did not produce the outcome he was expecting. Open-heart surgery was in sight. I was in Andre’s bedroom, sitting on the computer chair. I put the phone down and all I could do is cry. I felt helpless. I would do anything for my little guy to avoid surgery. Why me?

Nothing would have prepared me for the last minutes with Andre before he was taken away from me once again. Totally sedated and ready for surgery, he did not know who I was; I could see it in his eyes. Sad images raced though my mind. What did I go wrong? Where did I fail? I wished my family were here. Why me?

Why Not Me? I have everything. I have a roof on my head. I have food on the table. I have clothes on my back. I have a good God. I am healthy. I have the best husband I can ever ask for. I have a supportive family. I became a mother on May 1st 2008.

Andre was diagnosed with a congenital heart defect known as severe Pulmonary Stenosis, Tricuspid Valve Regurgitation, and an enlarged right atrium. I became the mother I always wanted to be, one who would bond with my child at a different level that many would not have the chance to experience.

At 6 weeks old, Andre was in the hospital for his valvoplasty. I did not know if I was going to hold him ever again but I lived to be a mother for another 6 weeks.

At 3 months old, Andre was in hospital for his open-heart surgery. The cardiologist recommended that it were done earlier, but the surgeons advised to wait until he was 3 months old. Ideally, it should been a surgery better performed at 4 months old, but it was too risky to wait any longer. I lived to be a mother for another 2 ½ months.

Through this entire ordeal, I did not have to work a job outside the home. This meant I could be by Andre’s side 24/7/365 during his recovery.

With the medical expenses adding up to unimaginable figures, I had medical insurance to cover all the procedures that were required for Andre.

I live 15 miles north of the country’s best hospitals for pediatric cardiac care.

I have access to great support from the CHD community.

I believe that everything in life happens for a reason. We may not understand it right away, but all I know that each of us has a God given destiny.

I believe that we are the chosen ones to deal with these difficult situations because we can.

I believe that remaining thankful for everything throughout difficult times keeps our heart from allowing anger to stay and develop into bitterness.

I believe that new purposes arise from difficult times.

I once believed in “why me?” Along with extremely difficult experiences with Andre, a new purpose in my life has emerged. Today, I am able to help others through their time of difficulty. I now ask a new question: “Why not me?”

The Care Behind the Kids!

Mark O'Shea and the Staff of the Pediatric Heart Institute at Vanderbilt Children's Hospital (Nashville, Tennessee) are back! But this is not a music video... it's a nine minute look at the Doctors, Nurses, and Staff of the Heart Institute and what they do. We present this to you on Valentine's Day with love and best wishes from both Kim and Steve!

CHD Survivor Video!

This is Mark O'Shea's video for the song "Look at You Now!", filmed at the Vanderbilt Children's Hospital Pediatric Cardiology Unit. As you'll see at the end of the video, Mark's one of us!

Enjoy!

Newborn Screening Test Could Save Lives

Research paper: Impact of pulse oximetry screening on the detection of duct dependent congenital heart disease: A Swedish prospective screening study in 39,821 newborns

The British Medical Journal

Routine screening of blood oxygen levels before discharge from hospital improves the detection of life threatening congenital heart disease in newborns and may save lives, according to a study published on bmj.com today.

The low false positive rate of pulse oximetry screening and the reduced need for treatment because of a timely diagnosis also makes this a cost effective intervention, say the authors.

Pulse oximetry screening has been suggested for early detection of congenital heart disease, but its effectiveness is unclear.

The authors found that in apparently well babies ready for discharge a combination of clinical examination and pulse oximetry screening had a detection rate of 82.8% for duct-dependent heart disease. The detection rate of physical examination alone was 62.5%. Pulse oximetry also had a substantially lower false positive rate (0.17%) compared to physical examination alone (1.90%).

However, some babies had been detected before discharge examination, meaning that the introduction of pulse oximetry screening in West Götaland improved the total detection of duct dependent heart disease to 92%. This was significantly higher than the 72% detection rate in other regions not using the screening technique. Interestingly, improved detection was achieved by a maximum of just five minutes of extra nursing time per baby.

Second Opinions: It Never Hurts

The following letter arrived in the CHD Blog's inbox from Farshid Bayat...

My daughter Ava was born with DORV, D-TGV, PDA, large VSD, ASD and COA on 21 October 2006. In a nutshell, Ava had two surgeries at the ages of 2 and 12 months. Her final surgery took place on 27 April 2008. Although most of the cardiac pediatricians we had visited before were of the opinion that Ava's life could not be saved, the excellent pediatric cardiac surgeon Dr. Navabi Shirazi managed to thoroughly repair the main defects in a ten-hour surgery. Ava was discharged from the hospital after a ten-day stay.

Today Ava acts like any other child with no physical restrictions. She is a bundle of energy who loves running and playing football with her older friends. Parents of children with CHD should remember to ask for a second opinion before choosing a surgeon. Had we known about Dr. Navabi from the very beginning, Ava would have been treated by only one surgery.

I wish I could say that it's the only time I've heard of such a story, but it simply is not the case. Until we have a central registry of CHD cases and better reporting information for CHD cardiac care facilities, the need for second opinions will remain vital in your (or your loved one's) quality care. Many times, at diagnosis, we have little time to prepare. We may feel comfortable with the individual(s) who provide the diagnostic results and recommendations, and be lulled into a sense of comfort in working with them. But I urge patients and parents alike to be diligent - ask those tough questions, research the facility and its staff carefully and talk to fellow CHD survivors and families when you can - it can make a tremendous difference.

No Drop in IQ Seen After Bypass

ScienceDaily, Nov 10, 2008 -- Good news for older children facing cardiopulmonary bypass, or CPB. Scientists at the Cardiac Center of Children's Hospital recently conducted a study of children aged five to 18 who underwent heart surgery while on a heart-lung machine to circulate their blood. The research found that the use of CPB does not cause short-term neurological problems in children and teenagers after surgery for less complex heart defects (such as valves or ASDs/VSDs), according to pediatric researchers. The new finding contrasts favorably with previous studies that showed adverse neurological effects after newborn surgery for more complex heart conditions.

Click here to read more...

Free Webcast on Complications of Adult CHD

Webcast, Patient Power®, to discuss
“Under-recognized Complications of Adult Congenital Heart Disease”
Wednesday, November 5th

6:00 pm – 6:30 pm Pacific
Oregon Health and Science University presents
“Ask the Experts” with Andrew Schorr at www.patientpower.info

Significant amounts of people are born with heart defects, many of them with congenital lesions. Because of new improvements in surgical and medical therapies, increasing numbers of these children are now patients in adulthood. Still, these patients remain vulnerable to dangers and complications of congenital heart disease. Join two Oregon Health and Science University experts, Dr. Craig Broberg and Dr. Joseph Weiss, as they unravel misconceptions and underline important factors for a disease that is often under-recognized. Both experts will help us understand long-term issues that commonly arise, the role of congenital heart disease in pregnancy, and heart rhythm disturbances. Tune in to hear a conversation with highly knowledgeable experts for a closer look into a condition many are living with.

WHO (FEATURED GUESTS):
Craig Broberg, M.D.: Pediatric Cardiologist, Oregon Health and Science University
Joseph Weiss, M.D, Ph.D.: Cardiologist, Oregon Health and Science University
Andrew Schorr: Host and leukemia survivor
WHEN: Wednesday, November 5th, 2008 from 6:00 pm – 6:30 pm Pacific

HOW TO PARTICIPATE: Listen at www.ohsuhealth.com/experts

ABOUT PATIENT POWER: Patient Power debuted in February 2005 and is a weekly show hosted by Andrew Schorr, eleven-year leukemia survivor, patient educator and patient advocate. The show features renowned medical experts on topics that include cancer, pain, diabetes, and heart specialists, as well as experts in clinical trials and top pharmacists. The show serves to bring patients together in a radio and Internet community to help navigate an often inhospitable healthcare system. Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate for effectively, when to get a second opinion from a specialist, and how to evaluate one treatment option over another.

Become a CHD Advocate!

When you are a survivor, or a parent of a child that is or was affected by a CHD, you often feel helpless in a sea of insurance, legislation and lack of information. Many many of us never knew that 1 in 120 children born each day are affected with CHD before we received a diagnosis. And almost everyone affected wants to change that.

Many groups across the U.S. are working on providing support and comfort to people affected by a CHD diagnosis. But who is working with our legislators and government agencies to bring about desperately needed change? How can we create a better future for CHD survivors?

The answer? The National Congenital Heart Coalition. Formed just over a year ago, this coalition is the culmination of six major, US national groups' efforts to create a climate of change for our disease. We seek to create better avenues of awareness and advocacy, which in turn will lead to greater focus on research and technological advancements that will save lives through earlier diagnosis, better screening, advancements in quality of life and surgical breakthroughs. Consisting of the Adult Congenital Heart Association (ACHA), the Children's Heart Foundation (CHF), Children's Heart Information Network (CHIN), Mended Little Hearts (MLH), Saving Little Hearts, It's My Heart (IMH) and Little Hearts, this newly founded organization is already making strides in unifying our cause. Current projects include the creation of a unified message, creating a presence in government agencies who monitor CHD and distribute funds for research and, most recently, a unified effort in lobbying our government for a central registry of CHD statistics.

Lobby Day has been a significant effort undertaken by the ACHA over the two years. This year, the entire National Coalition (NCHC) is behind the effort, and YOU are invited to help us make a difference! You are welcome to attend the lobby day, which will be held on February 10, 2009 in Washington DC. Or, you may learn how to participate in your own local area.

Online registration is now open and available at: www.achaheart.org/getinvolved/lobbyday2009.php.

Too Close To Home...

A recent article in The Sun (13 Sept) asserts that a teenage girl with a congenital heart defect died after telling her gym teacher she did not feel well. She was warming up for hockey practice when she asked to stop because of chest pain but, according to classmates, the gym teacher told her to keep going. The classmates then watched her collapse on the pitch.As a heart parent, I can tell you that this is one of my biggest nightmares. I've been unable to let go of the bond with my daughter into another's care (other than family members and the occassional night out while the neighbors come over). Granted, she's only two at this point, but I worry about the day when she will enter public or private school, out from beneath my watchful eye. I've heard so many stories about children with special directives and orders who are overlooked or ignored by their teachers, counselors, coaches, etc. How will I protect my daughter from such a tragedy, yet encourage her toward independence?

Of course, no one can fully protect their child. I understand this. But one can take steps to help ensure a tragic accident such as this one does not occur. The parents of the girl who passed away at hockey practice had made the school aware of Sasha's condition, so they assumed that this information would be passed on to her teachers. Apparently, it was not.

As parents, it is our responsibility to teach our children how to live with their heart condition, to know their bodies and be able to judge accordingly when "enough is enough." The father of the deceased child said, “Sasha had lived with her heart condition since she was born and she knew her own body. Yet even though the school knew she had this problem, they still didn’t listen to her when she said she was unwell.”

Clearly there is something to be learned from this tragic incident. I know I personally take the following from it:

1. Teach your child about their heart condition. Help them to understand their body.
2. Make sure your child's caregivers are aware of his or her condition, and the potential stresses that could lead to a serious medical crisis.
3. Teach your child that it's OK to take breaks when you need to. Even if a coach, friend or other person is pushing you to go farther, your child is the best judge of his/her body. Don't take unnecessary risks.
4. Talk to gym teachers, coaches and other sport instructors that your child will be working with. Make sure they understand the child's condition and any special considerations and precautions that should be taken.
   

What do you do to protect your child? How have you taught him to read his body's signs? How do you help her to engage in a healthy, active lifestyle without providing undue stress to her already fragile heart?

The Tallest Kid in the Room

There's a great new blog out there that I'd love to point our readers to... Adventures of a Funky Heart. The blog is written by Steve, a 41-year old survivor of Tricuspid Atresia. He's allowed us to reprint a portion of a recent entry here. Enjoy, and be sure to check out Adventures of a Funky Heart!

July 28, 2008 by Steve

They always have Highlights for Children. It’s a common staple of any Pediatrician’s office, but it never seemed that they made the magazine available for home delivery. I always wanted a subscription to Highlights, because I enjoyed all the puzzle pages. But that was then. Times have changed, and now I’d rather hae a subscription to a good baseball magazine. Most children aren’t that interested in baseball, so I need to bring my own.

I walk into the doctor’s office and I can feel the eyes boring into my back. I can’t see them, but I know that everyone is looking at me. When someone my age comes into a pediatrician’s office without a child, everyone stares. What’s he doing here? If they are wondering now, just wait until the nurse checks me in and tells me to have a seat.

Usually all of the adult chairs are occupied. It’s impolite to stand in the waiting room – there’s no rule against it, but I’ve never seen it done unless every seat is taken – so I sit in one of the children’s chairs. That’s an adventure unto itself. You sit down as you normally do, but you just keep going down until your bottom hits the chair with a bone jarring THUMP and your knees are level with your eyes. Now I look stupid, so I stretch out my legs. Not only am I blocking the walkway, but now I really look stupid, so I pull my legs back in. Hopefully this won’t be as bad as the time that I had pneumonia: my doctor admitted me to the hospital, and after a 4 hour wait in the ER I learned the only available bed was on the Children’s wing. It was a loooooooooong way from my rear end to the child sized toilet, and I was too far down to stand up! I literally had to roll off the seat and then get to my feet. But there was no room in the inn, you take what you can get, and beggars can’t be choosers.

Until I was 30 years old I saw my local pediatrician for non-emergencies. It works the same way for kids with heart problems. “Adult” Cardiologists can’t deal with us – they are trained to deal with heart attacks, clogged arteries, and all the problems that your heart develops as you age. They usually don’t have experience dealing with Congenital Heart Defects (CHD). A friend of mine – also a Cardiologist – once said that if you chose to specialize in Adult Cardiology, you received about two hours of training in CHDs. Basically just enough to know that they exist. So no matter our age, Cardiac Kids are still patients of a children’s doctor.
But now there’s a new specialty, known as an Adult Congenital Heart Defect doctor. Adult Congenital Defect care is not taught at any medical school (yet); many of the ACHD docs are really Pediatric Cardiologists. Since their patients stay with them practically all their life, these “children’s doctors” found themselves dealing with questions about work, pregnancy, dating, insurance… questions that Adult Cardiologists usually have to answer. And so the field of ACHD Cardiology was born.

You won’t find one on every corner, but ACHD care can be found. Usually, you’ll need to go to a major medical center. I live in rural South Carolina; the ACHD centers in the South include Duke University, Emory University, and the University of Alabama at Birmingham (UAB). Other major centers include The Mayo Clinic, Stanford, the Philadelphia Adult Congenital Heart Center and Children’s Hospital of Boston. There are other clinics, of course, but those are the ones that spring immediately to mind. And now, the waiting rooms have people who are more in my own age range.

I miss the visits to the Pediatric Cardiologist, though. While I’m sitting there trying to get comfortable, absorbing all the stares, the kids don’t pay a bit of attention to me. Kids are kids, they are usually congregated in the play area, getting along famously and having a great time. For once, they aren’t being left behind on the playground – everyone is moving at about the same pace.

The parents are the ones sitting there with the worried look on their face, with good reason. I always hope that one of the parents will speak to me, perhaps ask if my child is sick. If they do, I’ll tell them that no, I’m the one with the heart defect. My parents were in the same boat you were. I’m 41 now, and still going strong. And hopefully someone will come to believe that with good medical care and a little good fortune, their child will do well.