Depression, Anxiety, & PTSD: Identifying the Need for Intervention

The mental health disorders known as depression, anxiety, and post-traumatic stress disorder (PTSD) affect approximately 1 in 10 people each year. Collectively, these conditions produce a multitude of symptoms such as feelings of hopelessness, sadness, guilt, pessimism, fatigue, loss of appetite, and even thoughts of suicide. So it stands to reason that this particular issue is extremely serious when considering most families who have experienced a congenital heart defect could possibly suffer from one of these mental health disorders. And it’s no wonder so many people who deal with a CHD (either their own or a family member’s) on a daily basis may end up suffering from these mental health conditions: they must deal with the emotional stress of the CHD diagnosis, the treatments, the medical procedures, surgeries, and the constant worry about the life-long health of themselves (or their family member).
That being said, it becomes urgently important to be watchful of the family members who deal with a CHD. Be on the lookout for signs that someone may be suffering from one of the above-mentioned mental health conditions. For example, if you notice someone is avoiding others, seems chronically sad or always tired, expresses feelings of extreme guilt, worry, or if they seem overwhelmed or have ever mentioned harming themselves, then you know it’s time to intervene.

When you do suspect someone is indeed suffering from depression, anxiety, or PTSD, here are some suggested things you can do:

• Do a little research (it never hurts to have plenty of information and resources if you plan on having any sort of intervention for someone who you feel is suffering)




• Sit down with the person and talk (ask them how they feel, what they’re thinking, let them know you and others are worried about them, share the researched information you found)




• Most importantly, encourage the person to seek help from a mental health professional (you can even offer to accompany them)




• Let them know you are there for them (encourage daily phone calls or visits, offer to help them with daily chores, etc.)

Some resources that may be of help:
http://www.cdc.gov/Features/Depression/
http://www.mayoclinic.com/health/depression/DS00175
http://www.nimh.nih.gov/statistics/index.shtml
http://www.webmd.com/anxiety-panic/guide/post-traumatic-stress-disorder
http://mayoresearch.mayo.edu/mayo/research/whiteside_lab/publications.cfm
http://www.mayoclinic.com/health/teen-depression/DS01188

Preparing your Child’s School for His or Her Special Needs

Although the school year has already begun, it’s never too late (or early) to think about what your child’s school needs to know regarding his or her special CHD situation. And any time is a good time to consider what information you should provide to your child’s school so they can better care for and support your child.

For starters, it’s always a good first step to schedule a face-to-face meeting with important school faculty members (nurse, principal, counselor, classroom teacher, etc.). This will help all individuals be able to put a face with a name and to get to know your personalities, expectations, and concerns in a personal yet professional setting. Printing off some general information/facts about your child’s specific CHD to take to this meeting is always advised. Copies should be given to at least the nurse and classroom teacher. If your child’s condition is severe enough that it will require a special needs counselor, then of course the counselor will benefit from the information sheet as well. During your discussion you should inform all pertinent faculty members of several issues. One issue being your child’s possible learning/developmental problems. Since some children with CHDs can develop learning delays or problems, let the teacher know you’d like to be made aware of any signs of concerns the teacher may have during the school year. That way you can address the concern with your child’s doctor and get his or her recommendations. Another issue to discuss deals with your child’s general health; since children with CHDs can be at a higher risk of contracting certain infections, ask the teacher to notify you if other children are sick. Also regarding general health, the teacher (especially the physical education teacher) should be made aware that your child may require more rest or may be prone to tiring more easily. There’s also the important issue of the medical care that your child may need throughout the day (medications, procedures, etc.); in these cases, the nurse and teacher should obviously be well informed about the specifics – your child’s doctor would undoubtedly supply you with information/handouts explaining your child’s medical needs that could be given to the nurse. An important (if not the most important) issue that most parents want to impress upon their child’s school is that their child is a regular kid…they should be treated as such. It’s important to let your child’s school know your desire to have your child feel “normal” and included like every other child.

Overall, it’s important to remember that while some children’s CHDs are relatively simple and may not require any special care at school, other children may need regular intervention and attention from school faculty members. So, it’s imperative that parents evaluate (especially with their child’s doctor) what exactly the school needs to know.

Choosing a Pediatric Cardiologist

It’s one of the most (if not THE most) important decisions you will make for your child once he or she is diagnosed with a CHD…choosing a pediatric cardiologist. When a diagnosis is made, parents go through so many emotional challenges that this overwhelming task can seem daunting or even impossible. But giving serious thought to who will give your child medical care is so important, and so many parents struggle with exactly what to look for when making their pediatric cardiologist selection for their child. After researching the medical community opinions and receiving parental input, we’ve compiled a list of some of the most important factors to consider when making that choice.

1. Referrals: At first, many parents are referred to a pediatric cardiologist by their child’s pediatrician (or a hospital pediatrician if the CHD is discovered at birth). But don’t feel you have to use the particular doctor who is referred to you. It’s your prerogative and right to be able to search and find the cardiologist that suits your family’s needs.

2. Insurance coverage: Although we hate to have to factor this into our decision-making process, unfortunately for many families, treating CHDs can be a long and costly journey, so knowing that your insurance will be accepted by the doctor/hospital you choose is definitely something to consider.

3. Location: In some cases, families claim they are willing to travel anywhere to seek medical treatment for their child. However, if it’s simply not a possibility for you (ex: work responsibilities, costly travel expenses, frequency of your child’s doctor visits, etc.), then definitely consider the proximity of the doctor’s office/hospital to your home.

4. Basic credentials: This is obviously one of the most important factors. What kind of education and training did the doctor receive? Is the doctor board certified in pediatric cardiology? What types of procedures do they have experience with?

5. Experience with specific CHD: For many, it’s simply not enough to know that a potential doctor has treated patients with CHDs. They want to be assured that the potential doctor has treated patients with their child’s specific type of CHD.

6. Doctor – Family Relationship: After having a consultation with this doctor, does he/she seem to be willing to work with your family and not just the patient (in other words, are they interested in educating and keeping you all informed or are they merely interested in treating the CHD)? Also, do you get along with this doctor (this may seem insignificant, but for many parents finding doctors whose personalities are compatible with their own makes their treatment journey that much easier)? Having said that, this may be one area that most parents would sacrifice if the doctor is exceptionally talented in their medical field of practice.

Even though this can be quite a stressful time, knowing what to look for when it comes to choosing your child’s medical caregiver can provide some much needed peace of mind.

Caring for and Empowering your Child

Ultimately, no one knows how to better care for your child than you do. As a parent, you have instincts, passion, and most of all love – all these things mean that you are perfectly capable of giving your child the best care possible. However, when you learn that your child has been diagnosed with a CHD, most parents can’t help but wonder, “How do I care for my child?” We all second-guess our parenting abilities from time to time, but when you have a child with extra needs, we may find ourselves second-guessing our actions even more. Here are some specific things that parents of children with a CHD should consider when providing care for their children.

Although many of the day-to-day tasks such as special feedings, looking out for signs of problems or complications, or administering medicines actually become like second nature and relatively “easy” over time, other issues within the realm of caring for our children are what cause us to doubt ourselves. One of these issues involves how to treat our children when it comes to addressing their illness. Whether your child is diagnosed with a CHD in infancy or later in childhood, you’ll have to explain to him or her things such as why they have a surgical scar, why they need to visit the doctor/hospital more frequently than some other children, why they must take medication every day, etc. Many parents think they can’t handle or shouldn’t address these issues; however, it is by addressing these issues and having these types of discussions with your child that makes your care for them even that much better.

Besides communicating with and educating your child, the main advice that numerous child psychologists and doctors will give regarding this issue is to encourage your child to become involved in their own care (when/if they are emotionally and physically able of course). This makes children feel much more confident and in control – children will most likely think, “Wow, if Mommy and Daddy trust me to take care of myself I must be doing great!” It’s a great tool to empower your child and yourself. Depending on the level of care your child requires, the doctor or other members of the medical team can give you specific instructions regarding how to incorporate your child in the caretaking process. And at the end of the day, involving your child in their own caregiving is the best way you as their parent can care for them as well.

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.

It's almost CHD Awareness Month!

What are you doing to spread the word about CHD, its warning signs, its long term effects and the little known facts about its frequency? We'd love to hear!


Traci Lisa's daughter, Cassidy, was born with Tetralogy of Fallot w/ Pulmonary Atresia. This heart mom is spreading the word about CHD through her talent... making awareness jewelry. Check it out!

Share your efforts with us and spread the word. February is National CHD month. What can you do to save a life?!

Health care system holds heart patients hostage

Check out ABC News' Hostages Dying for Healthcare Reform article... it sounds just like my family, does it sound like yours?

Some takeaways from the article:

• Many of us are captive to our big company insurance plans - no other companies will take us, and if we lapse in our policies, we're out of luck due to pre-existing conditions.
• In 2005, 60% of all bankruptcies were related to medical expenses. Wonder what it is now that the recession is in full swing...
  
• Heart conditions account for $123 billion in health expenses a year.

We may not agree within our community of heart warriors what the best solution is for health care reform, but we have all, likely, lived first-hand the need for change. Take a moment to write your congressional representative and share your story with them.

Treatments Hard to Come By...

Take a peak at this entry on the Wall Street Journal blog... it doesn't come as a surprise to patients and families of CHD patients, but it's news all the same:

There is not enough research into CHDs.

What's wrong, however, is the statement that this problem is too small for companies to invest research in. With 1 in 120 (approximately) kids born with heart defects, and a large percentage of those kids needing intervention, you can bet it's big enough to pay attention to.

The article does highlight, though, that there is hope in terms of new research. According to WSJ, the NIH is studying treatments in children with certain heart conditions and the American College of Cardiology is launching a catheter registry that aims to help inform doctors who treat kids. And at least one heart device for kids appears to be on the way: Medtronic’s experimental heart valve for both children and adults who had heart defects at birth.

Baby steps, but we can get there!

Never Give Up

An article published by Associated Press today left me dumbfounded. It reminded me to never, ever give up hope. You've GOT to read this article in its entirety (see summary below). See if you feel the same...

British girl's heart heals itself after transplant

Excerpted from Maria Cheng, Ap Medical Writer – Tue Jul 14, 12:40 am ET

In 1994, when Hannah Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs as well. To avoid a risky heart/lung transplant, doctors took a chance at a new and novel idea.

Sir Magdi Yacoub of Imperial College London thought that said that if Clark's heart was given a time-out, it might be able to recover on its own. So in 1995, Yacoub and others grafted a donor heart from a 5-month-old directly onto Clark's own heart. After four and a half years, both hearts were working fine, so Yacoub and colleagues decided not to take out the extra heart.

However, the powerful anti-rejection drugs Clark was taking caused cancer, which led to chemotherapy. Even when doctors lowered the doses of drugs to suppress Clark's immune system, the cancer spread, and Clark's body eventually rejected the donor heart.

In February 2006, doctors removed Clark's donor heart. Luckily, by that time, Clark's own heart seemed to have fully recovered. Since then, Clark — now 16 years old — has started playing sports, gotten a part-time job, and plans to go back to school in September.

At the moment, doctors aren't sure how that regeneration happens. Some think there are a small number of stem cells in the heart, which may somehow be triggered in crisis situations to heal damaged tissue.

Granted, Hannah's case is a rare and miraculous one, but it does give us a window of hope for the future!

Side note - even if this were to become an option for treatment in the future, there is a serious shortage of donor organs available for such transplants. Consider becoming an organ donor today, and asking your loved ones to do the same!

Great News: Scientists ID'd Heart Stem Cells!

Source: Constance Holden, ScienceNOW Daily News
2 July 2009

I was thrilled to read today that scientists have finally identified the cardiac stem cells that create all of the major cell types in the human heart. In recent years, scientists identified these cells in embryotic mice, but now a team at the Massachusetts General Hospital in Boston have found these same cells (that express the protein Islet 1) in humans. The team reports its work in Nature.

What does this mean? That researchers are one step closer to creating new cardiac stem cells in the heart's major cell types: heart muscle (cardiomyocytes), smooth muscle, and blood vessel lining (endothelium).

Chien, the researcher who made this astounding discovery, cautions that these primordial stem cells could not be used for therapy because they could develop into undesired cell types, but they could be used for disease modeling and drug screening and - most importantly to those of us affected by CHD - further research on congenital heart malformations. Chien speculates that CHD's "may be a stem cell disease" because Islet 1 cells are clustered in areas that are "hot spots" for heart defects.

The future I hope it holds for us? The possibility of growing human "heart parts" (such as strips of muscle or a valve) to assist CHD survivors.

Physical Restriction after Fontan: How do You Know?

A recent article in the American Heart Journal from researchers at the Hospital for Sick Children in Toronto questions the use of physical activity restrictions for children after undergoing the Fontan operation. In the abstract online, the researchers studied how the information regarding restrictions are conveyed from the cardiologist, parent and in the medical charts - often these three sources disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted. Parents and cardiologists report the same body contact restrictions, but differ for exertion and competition restrictions. Medical charts reflect competitive sport, but not body contact or exertion restrictions. So, what to do if you're a parent?

This study suggests that parents are left with uncertainty about physical activity, and rightly so, given the significant variance in the sources of information they receive.Primary care doctors are often not included in the loop (medical records don't reflect the restrictions for exertion and body contact).

Cardiologists need to work to ensure that activity restrictions are accurately conveyed, which will enable parents and primary care providers to confidently encourage the active lifestyles. And parents, talk to your cardiologists - don't take the advice of the primary doctor (though he or she may be correct). While your primary care physician is likely a wonderful, well rounded person, the specialist is better able to answer the questions specific to your child's condition.

Charities Recognized for CHD Efforts

This past month, two outstanding CHD-related charities were selected by IntelliClear as its 2008 Clarity Trust recipients. Congratulations to Its My Heart and HeartGift Foundation!

As the Congenital Heart Futures Act is being introduced to both houses of the United States Congress this spring, IntelliClear recognizes this year the outstanding efforts of It's My Heart and HeartGift as leading the charge on children's CHD.

"According to the American Association of Thoracic Surgery, an astonishing 93% of the world's population has no access to cardiac surgery. With the assistance of generous corporate citizens like IntelliClear -- by combining our resources, our skills and our compassion -- HeartGift's all volunteer team of pediatric physicians will continue to save the lives of children born with CHD," says Lisa Rodman, Executive Director of The
HeartGift Foundation.

"Since CHD is America's #1 birth defect, it is vital that we bring awareness to the nation via community outreach, hospital programs and other support services that bring families and resources together. It's My Heart, Inc. relies heavily on the compassion of corporations like IntelliClear Inc., allowing us to further our advocacy and awareness programs for those affected by CHD," says Corrie Stassen, Executive Director of It's My Heart, Inc.

If you haven't taken a chance to check out these two fantastic charities, take a look today!

Mapping the Heart: Cross-functional Research Leads to Breakthrough

Source: http://www.bjhcim.co.uk/news/2009/n904026.htm

Imagine if imaging of the earth's inner core could lead through to a breakthrough in cardiology... and you will get an idea of what is happening at Bournemouth University.

A computer modeling program was created by Professor Nick Petford to study how liquid metal flows through cracks during planet formation. “For a long time people thought the flow of liquid iron along the edge of grains and through narrow channels and cracks was not possible. NERC funding allowed me to develop a technique for importing object images of rock slices into a software package and then run a fluid-flow computer simulation to look at how liquid metal inside a meteorite moves around under pressure.” Then he realized that the software could be used to do so much more...

Working with a heart radiographer at the Royal Bournemouth Hospital, he used the same simulation technology to look at the blood flow in a diseased human heart. They used data from an actual MRI scan, adjusted the viscosity and density of the fluid to reflect that of human blood, then solved the equations to discover where a blockage existed.

The MRI had not shown an obvious blockage, but utilizing the software, they predicted, exactly, where a clot was located. Just imagine the implications for future studies in this area and earlier diagnoses for patients!

A detailed article regarding this research can be found at: www.nerc.ac.uk/planetearth.

Congenital Heart Futures Act - Now a Reality!

Late yesterday the Congenital Heart Futures Act (Bill S. 621 in the Senate and HR 1570 in the House) was introduced to Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.

So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation. It just takes a minute - here's how you do it:

1. Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.
   
   
2. Draft your email - Here is a template to get you started.
   
   Dear [Lawmaker name here]
   
   I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.
   
   Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.
   
   [Insert 2-3 sentences saying why you care – some examples:
   
   From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.
   
   For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.
   
   From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.
   
   To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.
   
   Thank you in advance for your help in securing a future for all those living with congenital heart disease.
   
   Sincerely,
   
   [name]
   [full mailing address]
   [email]
   
   
3. Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.
   
   
4. Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it! After your done, take a moment to pass this news on to your friends, family and colleagues.

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

Need more information? Contact info@achaheart.org with any questions.

Stem Cells: What Does it Mean for Us?

By now you've likely heard the news - Obama has lifted the ban on stem cell research, which will open the way for many new lines of embryonic stem cells. It's controversial to many, but what does it REALLY mean in terms of research and innovation for the creation of heart tissue?

First, let's clarify what, exactly, embryonic stem cells are. Human embryonic stem cells are our body's most versatile cells, possessing the potential to develop into any cell type in our bodies (with the exception of a placenta). Already such cells have been used to form heart tissues and valves. Embryonic stem cells are created during in vitro fertilization for persons with reproductive issues. Blastocysts are formed, from which the cells are harvested. The permission of the donors are given to donate these cells for research. Only 21 lines of these cells have been researched since 2001, due to a ban Bush placed on further research beyond the existing lines.

In a press release dated March 9, the International Society for Stem Cell Research (ISSCR) applauds President Barack Obama’s executive order, citing its potential to relieve suffering caused by diseases and conditions (including those caused by heart defects). The new policy allows scientists to utilize the many hundreds of valuable lines created since 2001, and relieves them from the substantial hurdles in duplicating equipment and other resources in order to separate privately- or state-funded stem cell research from federal government-funded efforts.

It's a hot topic most of us don't want to discuss in public. But it's a discussion we need to have. What do you think? Does the announcement restore the "integrity to the relationship between politics and science that has been traditional in the U.S.,” as asserted by Irving Weissman, President-Elect of the ISSCR? Would you be a willing recipient of the tissues and valves created in this manner?

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?”