Holes to Half a Heart…The Spectrum of Congenital Heart Defects

On July 29, 1999 our grandson, Joshua Kisler was born to Martha and Scott Kisler. Within a few days his pediatrician discovered a heart murmur and before he was a week old he was in a pediatric cardiologist’s office in Tulsa, OK where an atrial septal defect (ASD) was diagnosed. ASDs are holes in the septum between the left and the right atria and are among the most common of congenital heart defects. Nevertheless, common or not, even with the assurance of the cardiologist that these holes often close on their own, his parents and his grandparents were very concerned. Surgery is necessary only if the hole is very large or does not close by age 3 or 4. Routine follow-ups were hardly routine, but indeed the hole did close and Joshua’s heart is healthy. WHEW!

Oakley Haddock, son of Trent and Chelsea Haddock was born on July 11, 2014. Shortly after his birth he was diagnosed with hypoplastic left heart syndrome (HLHS), a rare single ventricle defect. We attend church with one set of his grandparents as well as one of his aunts and uncles, so immediately his heart and his struggle became the focus of our prayers.

Hypoplastic left ventricle syndrome (HLHS) is a rare congenital defect of the heart that occurs in 1-3 of 10,000 births, but is the most prevalent of single ventricle defects. Between 1988 and 2005 there were 16, 781 cases identified in newborns. In spite of the low incidence, without intervention it accounts for 25%-40% of all neonatal cardiac deaths. (Rodriguez and Chang, J. of Ped, 2008) (Diggs et al, J. of Thoracic and Cardiov Surgery, 2010)

In requesting to write about Oakley here, I got this message from his grandmother, Joy Somero:

“A story about Oakley would be great. He will have his seven month birthday on the 11th….Wednesday.

He continues to thrive. His Vanderbilt appointments are farther and farther apart. His medication has been cut back and he is the happiest baby that you will ever see.

He has a beautiful smile . . .and is always ready to share it. He doesn’t know he is different and I can tearfully say that he has made this whole experience look easy. They told us that he went to sleep smiling for his second surgery.

He will have to have three surgeries for the best case scenario. The first is within days of birth if the baby is strong enough. The second is at about four months old. The third surgery is usually at three year old. That is because they outgrow the shunt and it will be replaced with a bigger one that they are not supposed to outgrow.”

Joshua and Oakley were born more than a decade apart, in two different centuries, in two different states with congenital heart defects a whole spectrum apart. Both were diagnosed early by talented pediatric cardiologists and in Oakley’s case a team including cardiovascular surgeons and others. BUT you know what, no defect in a newborn is minor to the parents and extended family of that baby. Even with emotional and spiritual support, the wear and tear on the physical body, the effects on the siblings of the sick child, the financial burden takes a toll. Whether it is only routine visits with echocardiograms every 6 months like with Josh or multiple hospitalizations and surgeries like with Oakley, the journey can be exhausting.

“This is what a miracle looks like” Shannon Somero Clark on her Facebook page

Oakley has had two surgeries so far and numerous extended visits at Monroe Carell Jr. Children’s Hospital Vanderbilt. As his grandmother reported at least one more surgery will be required.

Joshua is a healthy 15 year old with all his cardiology visits in his past. He plays baseball and sax in the Morrison High School band. He is a very energetic witty boy.

Joshua Kisler…May, 2014

I would ask that those of you who pray, please pray for a healthy outcome for Oakley, for his parents, sisters and his extended family and for every child born with a congenital heart defect.

For more information about Congenital Heart Defects, may I suggest the following websites:

Children’s Heart Foundation

http://www.childrensheartfoundation.org

American Heart Association

http://www.heart.org

Birth to Fifteen…Fifteen Heart Walks Completed

Born on a Thursday, June 1, 2000, Lindsey Curtis proved true the old adage, “Thursday’s child has far to go.” We had heard stories that her mother Tammy had been born with a full head of hair so we were not surprised when Lindsey arrived with a full head of chocolate brown curls. At birth she seemed to be a big healthy baby–I do not remember her weight, but she was hefty. Terry and I were fortunate enough to be serving Pembroke Christian Church where her parents, grandparents, aunt, uncle and cousin were members at the time of her birth, so on Friday Terry drove to Nashville to see Tammy, John and Lindsey.

He returned home beaming, prayers had been answered, Tammy was doing great and Lindsey appeared to be in perfect health. He said they expectated to be discharged and home the next day.

Appearances can be deceiving.

By afternoon on Saturday June 3rd, Lindsey’s situation had changed. She was transferred to Vanderbilt, diagnosed with coarctation or constriction of the aorta and like 25% to 50% of babies with coarctation of the aorta she also had a bicuspid aortic valve. She would need surgery to prevent her heart from overworking and prevent the hypertension that often occurs when this defect goes undetected. She was scheduled for surgery on Monday, June 5th.

In order to perform the surgery, it was necessary to stabilize Lindsey for the procedure. On the spiritual side, countless prayers were being offered in Lindsey’s name. As is often the case we on the outside knew little about congenital heart defects let alone about Lindsey’s specific diagnosis. Surgery on the tiny heart of an infant seemed so risky, but in her case so necessary.

While notations of coarctation first occurred in autopsies as early as 1740, actual diagnosis was in 1832. But it was Blalock and Park who proposed the first surgical repair in 1944, describing a bypass from the left subclavian artery to the aorta to circumvent the area of narrowing. Crafoord and Nylin performed the first resection with end-to-end reanastomosis in 1945, whereas Gross used homografts to replace the narrowed segments of aorta. In 1966, Waldhausen and Nahrwold performed the first subclavian-flap aortoplasty. More recently, advanced interventional cardiology techniques have led to an interest in percutaneous transluminal aortoplasty for both native coarctation and recoarctation. The end to end anastomosis of the aorta performed on Lindsey came about during the late 1970’s.

A lot of research and experimentation had occurred to bring pediatric cardiac surgery to the point where it was on June 5, 2000. A lot of training and experience brought the surgical team to the point where they were when they entered the operating room and performed an end to end anastomosis. In that procedure, the narrowed area of the aorta may be removed and the two ends re-connected.

From the time of the first notations about coarctation of the aorta to Lindsey’s surgery 260 years had passed with the most rapid advances in diagnosis and treatment occurring in the latter part of the 20th century. The American Heart Association was established first in 1924 by a group of concerned physicians but its public debut came in 1948 and since 1949 it has grown rapidly. It funds research, educates health professionals, and the public in various ways to reduce the risks of heart disease as well as seek new treatments.

Lindsey came through her surgery and has to grow healthy in body, mind and spirit. Among her activities that I have followed vicariously are dancing, hunting, fishing and walking for the American Heart Association. Since before she could actually walk, she has participated and raised money for heart research on the Annual Heart Walk in Christian County, Kentucky. This year as in years past she has a goal. Let me share her words with you, courtesy of her mother Tammy:

“I’m walking in the American Heart Association’s 2015 Christian County Heart Walk on Feb 21, 2015 and I’ve set a goal of $1500 to raise funds to decrease heart disease and stroke in our community. They are the leading causes of death and disability in the US.

Please support me with a donation. Follow this link to my personal page where you can make a secure, tax-deductible online donation. http://s.heartwalk.org/1zT55ig

Did you know? Heart disease kills more women than all forms of cancer combined and 1 in 3 Americans have some form of cardiovascular disease.

Please support me in my efforts – together we can make a difference! “

Have you ever noticed that TOGETHER is how we make a difference. For the first 5 years of Lindsey’s life, Terry and I got to be a part of watching her grow in an up close and personal way. She came to our door on Halloween dressed as Dorothy from the Wizard of Oz along side her cousin, Drew (3 months her junior) as the Cowardly Lion. The two of them came forward for the Children’s Sermon as soon as they could walk and participated in the Christmas programs. Both of them loved music, like their Moms and their granddad, Terry Gee.

Drew and Lindsey, Cousins Forever

Before we left Pembroke, there was a Sunday when the congregation sang a song we often did, “God will take care of you.” Lindsey was incensed and ask her mother, “Why was God only going to take of Drew?”

Well, Lindsey, I think everyone who knows and loves you realizes that God has always taken care of YOU and I trust He will continue to do so. So here you are, Lindsey, fifteen years later and as I said in the beginning as a Thursday’s child you still have far to go. I feel sure the journey will be worth it. Know that Terry Kisler and I are praying for a successful WALK on February 21, 2015.

I am going online right now to contribute.

“Heart of my Heart, I love that Melody”…and that Rhythm,too

February is American Heart Month

In 1961, my grandfather, Ray Bryant climbed the staircase in the Tillman County, Oklahoma Courthouse walked into a judge’s office, put out his hand to shake and dropped dead of a heart attack, sudden cardiac arrest. He was 65 years old. Last week a friend of ours was refereeing a basketball game when his heart stopped. Thanks to people trained in Cardiovascular Pulmonary Resuscitation (CPR) and the availability of an automated external defibrillator (AED) he was resuscitated, transported to a hospital and as of last information was waiting to have a defibrillator inserted. We have come a long way in 54 years! Why? Heart Research and dedicated professionals, para-professionals, and a vast array of folks who have been touched by heart disorders as patient, family, or friends, who have continued to support the on going research to prevent and treat heart disease.

February is American Heart Month, so I am going to dedicate this site to providing information and insight into the heart which when it works right supplies life giving blood flow and oxygen to every nook and cranny of our bodies from 8 weeks gestational age until it stops for good. This week Feb. 7-14th is CONGENITAL HEART DEFECT WEEK, so watch for a very special story about a very special young lady tomorrow and on the following day our own experience when our grandson Joshua was born.

Basic Life Support Card

Today I am going to leave you with the warning signs of a heart attack and a suggestion that if you are able seek out CPR courses in your area. You could save a life and lives are worth saving.

Here are signs that can mean a heart attack is happening:

Chest discomfort. Most heart attacks involve discomfort in the center of the chest that lasts more than a few minutes, or that goes away and comes back. It can feel like uncomfortable pressure, squeezing, fullness or pain.

Discomfort in other areas of the upper body. Symptoms can include pain or discomfort in one or both arms, the back, neck, jaw or stomach.

Shortness of breath with or without chest discomfort.

Other signs may include breaking out in a cold sweat, nausea or lightheadedness.

As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting, and back or jaw pain. Here are some differences and similarities in women’s heart attacks.

Heart Attack Signs in Women

Uncomfortable pressure, squeezing, fullness or pain in the center of your chest. It lasts more than a few minutes, or goes away and comes back.

Pain or discomfort in one or both arms, the back, neck, jaw or stomach.

Shortness of breath with or without chest discomfort.

Other signs such as breaking out in a cold sweat, nausea or lightheadedness.

As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.

If you have any of these signs, don’t wait more than five minutes before calling for help. Call 9-1-1 and get to a hospital right away.

For more information: http://www.heart.org