Every parent looks forward to giving birth to a bouncing and healthy baby. For one mother, learning that her child has a heart condition evoked a mixture of emotions.
Born with a hole in her heart, Luthando Sibiya, the one-and-a-half-year-old tiny warrior. tries her best to live normally, play, and engage with other children, making every beat a testament to her strength.
A scary and confusing time
Finding out about her daughter’s condition six months after her birth, Palesa Sibiya from Katlehong in Johannesburg, says was a confusing and scary time for her. Now, she is learning to take care of her daughter in the best way possible.
“My child was admitted to the hospital due to not growing well. The doctors initially thought it was severe acute malnutrition (SAM). After a week, they booked us for an echo at Barangwatha Hospital, and that’s where I learned about my child’s condition: she was born with a ventricular septal defect (VSD), a hole in the heart.”
Problems from the start
According to the Mayo Clinic, a ventricular septal defect (VSD) is a hole in the heart. It’s a common heart problem present at birth (a congenital heart defect). The hole occurs in the wall that separates the heart’s lower chambers (ventricles).
“A ventricular septal defect (VSD) occurs as the baby’s heart is developing during pregnancy. The muscular wall separating the heart into left and right sides doesn’t form fully, leaving one or more holes, and the size of the hole or holes can vary. There’s often no clear cause, but genetics and environmental factors may play a role,” reads an article by the Mayo Clinic.
Sibiya was not prepared when she first found out about her child’s condition.
“I was shocked and confused when I found out. The doctor explained that she was born before her heart was fully formed, but assured me that it’s a common condition for a baby to have.”
Sibiya outlines that the symptoms that alerted her to her baby having a problem included her not feeding and growing, sweating when feeding, and her heart beating faster than normal.
“She’s still not growing up as expected and like children her age. Her heart beats very fast, her feet swell, and she has a loss of appetite. However, she is very energetic and smart. You can never really say this little person has a heart condition.”
Juggling life’s responsibilities
Furthermore, Sibiya mentions that it is sometimes not easy to balance caring for her child’s heart condition with other responsibilities in her life.
“It is sometimes very hard to balance responsibilities because she needs full attention and to be with me always, as I am the only one who knows how and when she takes her medications. I try by all means to give my son attention whenever she’s out playing or sleeping.
“As for work, I am able to work because we go in and out of hospitals. Financing those hospital bills is also not easy at times; I use her child support grant most of the time. Right now, she’s only taking the anti-failure treatment, so it’s better.”
In preparation for her daughter’s anticipated heart surgery, Sibiya hopes they discover that her daughter’s heart is closing on its own; if it’s not, she hopes her surgery will be successful so she can live a normal life.
Open heart surgery on the cards
“The doctors said they first want to do a Cath and install a camera in her heart to check how big the hole is and whether it is closing on its own or not. If it isn’t, then she will have open heart surgery, whereby they will take out her heart and fix it.
“At the moment, we are struggling with her weight gain, and that is delaying her from having surgery. Doctors say she’s not yet strong enough to have surgery. I however hope and pray that they find out that her heart is closing on its own.”
Amid the hardships, Sibiya’s love for her daughter shines brightly. She speaks of the pure joy her child gives her, the milestones her child reaches, and the indescribable beauty of witnessing her fight and triumph over this heart condition.
A little beacon of hope
“Her energy gives me hope that her operation will be successful and she will live a normal life after surgery. Overall, she’s doing fine; her milestones as a child are normal, and she’s a happy, beautiful, and loving child.”
The Mayo Clinic highlights that symptoms of a ventricular septal defect (VSD) depend on the size of the hole and if there are any other heart problems. A small VSD may never cause symptoms.
In general, they state that VSD symptoms in a baby may include:
- Poor eating
- Slow or no physical growth (failure to thrive)
- Fast breathing or breathlessness
- Easy tiring
- Whooshing sound when listening to the heart with a stethoscope (heart murmur)
It is urged to call your health provider if any of these symptoms develop.
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