No longer broken
Baby Riley was born with a hole in her heart – look at her now!
“RILEY IS MY second child and, as with my first child, this pregnancy started off as completely normal. My four-month check-up was therefore just routine for me. When they did the scan at my local [Hanover] day hospital, they saw that there was something wrong with the baby’s heart and they sent me to Groote Schuur Hospital for an ultrasound.
The ultrasound showed that the baby had a hole in her heart that affected the normal blood flow to her heart. I was offered counselling and asked if I wanted to terminate the pregnancy as Riley’s condition could lead to several complications in the long run. I remember just going completely silent. How could this happen to me? I remember coming home from the ultrasound and I could not utter a word to my family. I just cried and cried.
I realise now that some people just can’t handle the thought of something being wrong with their baby. I remember crying a lot after receiving the news, but I was still the stronger one between myself and Riley’s father. When I finally told my family later that day, they were all shocked at the news but it was as if the news brought our family closer. We decided as a family that we would not terminate the pregnancy, that we will accept this baby whichever way she is.
At 34 weeks my water broke. The birth went well and Riley was only in hospital for a week before we could take her home. Riley is one of a kind! Even as a newborn she was very strong and she has always had a normal weight for a child of her age. Because there was never a problem with her weight and development, the doctors said that we should wait until she was two years old before having the operation.
Different children have different problems as a result of a hole in their heart. For Riley it manifested in a genetic defect whereby she has extra digits on
her hands and one foot: she has an extra little finger on each hand and an extra toe on one foot. Her legs and arms are also a little short for a child of her age. This is something that the doctors already picked up when she was in the womb as they measured her arms and legs and compared it to a normally developing fetus. Her teeth also did not come out in the normal order: she cut her molars first, for example.
Riley has struggled with bronchitis and asthma from a young age. It always seemed as if she immediately picked up any bug that was going around and it would go straight to her chest. Any change in the weather patterns, even strong winds, would affect her health.
From the moment she came home as a newborn baby, it was very important to keep the house germ-free. We are not allowed to have any animals or carpets in the house and no-one is allowed to smoke in our house. People quickly learned that they had to wash their hands before touching and handling Riley.
Having a baby, especially a sick one, has been hard for Riley’s older brother Nahum. I was often away in hospital with Riley and his granny or my sister would look after him. He is in Grade 1 now and can be rebellious and naughty. He loves his sister though and is very caring towards her.”
AND THEN THE OPERATION
“In the back of our minds, we always knew that Riley would have her big operation to close the hole in her heart when she was two, but it still happened quite suddenly. We received a call on the Friday to say that we should come in to Red Cross Children’s Hospital on the Monday morning and they did the operation the next day. The operation took four to five hours. Those hours, waiting to hear that everything went well, was terrible. It was such a relief when the doctors finally came out of the operating theatre and said that everything was fine.
After the operation, Riley had to stay in the hospital for a week and a half. She got well very quickly and was off the machines on the third day. The scar on her chest where they cut her open also healed very quickly. We were scared because children often get infections and then they have to open them up again. After she was discharged from hospital, we had to be extra careful to keep everything germ-free as it normally takes up to six weeks for the bone to heal where the chest was opened.
We were home for a few days before Riley became sick. I noticed that she was breathing too fast and coughing and we took her back to hospital. She was very, very sick and had to go back to the high care unit. She had a very high temperature and had to receive oxygen. The first round of antibiotics did not work and she had to start a second course. This time around she responded to the medicine and became better.
Riley went for the big two-month check-up and scan in mid-april and everything has healed properly. The doctors are confident that everything will be fine and she will have a long and happy life. She will still go for regular check-ups at the clinic, but she will be off all medication. She is a strong little girl and there is nothing wrong with her mind. She speaks very well for her age and is always busy.
This whole episode has brought our family closer together. I made the decision early on that I would give up my job to look after her full time. The loss of income has been hard but I definitely think it helps if you can be with your child through every step of their illness. I have had so much support, not just from my family and friends, but also from the hospital. The doctors at Red Cross have been incredible.
Having to deal with an illness like Riley’s is a life-changing experience. I would never have chosen to have a sick child, but I have learned so much throughout this process. I believe that there is always something positive that you can take from an experience like this. For Riley, hopefully, the scar on her chest will eventually be the only reminder of her childhood illness.” YB
IT ALWAYS SEEMED AS IF SHE IMMEDIATELY PICKED UP ANY BUG THAT WAS GOING AROUND AND IT WOULD GO STRAIGHT TO HER CHEST