Raising a Heart Healthy Child with Congenital Heart Disease – Interview

Many may see the title, raising a heart healthy child with congenital heart disease, as an oxymoron in that you may believe that if the heart is healthy it will be free from defect or disease. Well, in the natural world I would agree with you, however if you are like me and believe in Angels and miracles, I beg to differ. I’ll expound on that statement a little later.

Mona Barmash of the Congenital Heart Information Network states, “Congenital Heart Defects occur in an estimated one in 100 births, or approximately 40,000 babies each year. Despite the fact that CHD is the most frequently occurring birth defect and the leading cause of birth defect related deaths, routine newborn screenings and/or sports pre-participation screening are NOT performed here in the United States. In Raising a Heart Healthy Child, it was mentioned there would be a hub sharing my family’s personal testimony concerning my niece who was born with a congenital heart defect. Let’s start by examining what congenital heart disease entails and how it could ultimately lead to congestive heart failure…

 Children Could Have Undetected Heart Problems aired on the ABC’s World News about a week ago. The cardiologists in this news release found startling results - 7 out of 94 sixth grade kids examined had undiagnosed heart conditions, 2 of which required surgery. Three additional kids were diagnosed with high blood pressure. It is important that people become aware of this CDH and learn the symptoms that can go undiagnosed as they did with my niece.

The American Heart Association states, “The word “congenital” means existing at birth. The terms “congenital heart defect” and “congenital heart disease” are often used to mean the same thing, but “defect” is more accurate. The heart ailment is a defect or abnormality, not a disease. A defect results when the heart or blood vessels near the heart don’t develop normally before birth.” The below video provides a look at some of the special children and their parents that have been challenged by CHD. The audio is disconnected however the words and pictures are quite vivid….

My sister is a nurse and the mother of my niece so I felt it appropriate for her to be interviewed to assist in providing details about the family’s ordeal with CDH. So here is her experience with raising a heart healthy child with congenital heart disease. Sis, please describe for our readers, the beginning of my beautiful niece’s life.

How many hours were you in labor?
44 hours

Where she was born?
Manhiem Germany

Her name and what it means?
Eucosia (named after Beethoven’s Eurasia which means erotic) Love’

When did you first suspect something was wrong with your baby?
On the third day of her life

What were the symptoms?
Her entire face was darkened, her lips were blue and she had no energy to breast feed or to suck a bottle

How long did it take to get the true diagnosis?
6 months

What was her diagnosis?
Tetra logy of Fallot

Are there any other identifying symptoms that may occur with CHD?
Bluish skin and or cyanosis, along with fatigue are the classic symptoms

After being given only a 2 percent chance of her surviving surgery, where did you get the strength to survive the ordeal?
Upon being told her diagnosis and poor prognosis, I felt as if all of the strength left my body, leaving me numb and deaf. While I knew the discussion of my daughter’s life was active between the physician, my husband and myself, I could no longer hear the words coming out of the physician’s mouth, and to date, I will never forget the expression of despair upon my husband’s face. He looked as if, his very life had left his body. I remember almost dropping Love’ from my arms, my knees were so weak with fear. I don’t recall strength re-entering my body until the day we were being discharged from the hospital after her surgery, some 7 months later. Yes, I walked around numb, unengaged with life around me for 7 months. Today, I’m still quite amazed at how I was able to render the daily care, nutritional preparation and provide the constant 24 hour specialized care that Love’ required, and hold down a job as an agency nurse. I can remember working 18 hour shifts, coming home and providing care for Love’ throughout the night, showering and driving to my next hospital assignment; following this routine for days at a time.

Describe how you endured the 40 day hospital stay?

The day of the surgery started at 4:00am, my husband and I wrapped our daughter in her favorite blanket and departed for the hospital. 2 hours later we handed her over to the surgical nurse, whom escorted Love’s tiny body down the long surgical corridor to the operating room, and then we waited and waited and waited. What should have been a 3-6 hour surgery, lasted for 18 hours. The next time that I saw my daughter, would be the very first time that I did not recognize my own child. Her tiny body was swollen, bruised and bandaged from the tip of throat down to her navel, with wires and tubes hanging from every orifice. Every inch of her body was bruised, tapped or wired. I fainted at first sight of being by her bed, the smell of blood from her fresh open wounds; the toxic odor of the anesthesia escaping her body was simply overwhelming; surely death was eminent.

Where did you get the strength to believe when things were grim during this recovery time?

About 35 days of doom and gloom in the ICU, and dancing with death by the hour had passed, as her weak infected body lay almost lifeless on a ventilator, restrained by both wrist and ankles; her dark, hazed, eyes swollen to the point that only tiny slits represented that her eyes were open; and with each inhalation, tears were released leaving a dried trail of salt that I wiped away every day. On day 40, Love’ miraculously pulled the ventilation tube out, which predisposed a potential crisis of death, in that the ventilation tube had been rotated so many times, that both nares (nostrils) had deteriorating flesh to the point that no nare remained to insert the tube, which left the only option of rushing Love’ to surgery for an emergency tracheostomy in which Johnnie and I had previously consented against. When Love’ extubated (removed the tubes from airways) herself; I felt relieved.. its finally over, but one minute of breathing on her own turned into one hour, and then another hour and then into the night. I knew then that Love’ was fighting to live and from her strength, my own strength started retuning. Just as life seemed to suddenly disappear from my body upon learning her diagnosis, life quickly returned as Love’ struggled to live. 5 days later I walked out of the hospital with my daughter in my arms.

How does one care for a CHD baby after surgery?

The post surgical care in Love’s case was easy, her father and I had been by her bedside for the past 45 days, learning everything that we could about her care that we were pros by time we were discharged home. If we had not been at the bedside participating with her daily care, the changing of surgical bandages, monitoring the cardiac monitor and her oxygen saturation and respiratory rates would have been overwhelming.

Are there any warning signs that one must look for after surgery?

Difficulty breathing, cyanosis or bluish tint to the skin and lips, and weakness of the extremities are all clinical signs of distress and should be reported right away.

Do CHD babies have certain dietary requirements while growing up?

No special diet was necessary for Love’ and to date she has tolerated a normal diet. Once the heart has been repaired, the child typically has the opportunity to now follow a normal childhood.

Are there limitations on their physical activities as far as playing kids games, etc.?

We were fortunate that Love’ had no physical limitation outside of healing from the surgical wounds.

Is there anything else you would like the readers to know about this disease?

Caring for a child with a Congenital Heart Defect can be overwhelming, because the defect encompasses one of the most vital organs, caregivers can be easily overcome with fear, but please know that fear is conquered with education and belief. Love’ is now a vibrant 20 year old with a bright future ahead. Faith, love, and hope are three of the strongest forces on this earth, embrace faith when situations appear uncertain, pursue love at each and every hurdle of disappointment, and remain hopeful at all times, expecting that at any moment a miracle will break through and change your night into day, your sorrow into joy, your struggle into ease.

Thanks Sis, for sharing your personal experience with raising a heart healthy child with congenital heart disease. I’m sure now you can see why the title of the hub is so appropriate although it may be an oxymoron statement. It was during this time that I discovered just how big and full of grace that God can be. My faith grew strong during this time because at the beginning of our journey an Angel expressed to me in my dreams that God would not take Love’s life, however I had to stand strong and believe for a miracle. Needless to say, there were many days when the doctors, as well as my sister and brother in law (being in the medical field) felt that medically any time during the day my niece would be gone…

Those days were spent asking my family not to give up and then watching all the hospital monitoring systems going absolutely haywire... Many times I would step away and find a scripture or a song lean on to prevent negative thoughts from entering my head... Again, I’m grateful to have been given the grace to have faith enough to believe in miracles; even when in the natural world things were grim. Others that have had to take this walk of faith with a child that has congenital heart disease know exactly how this feels. Again this is a cardiovascular disease (defect) that people must become aware of the symptoms in order to seek help for the child before it is too late. Hopefully, some of the contents within this hub will assist in providing education in some small miraculous way…