No longer bro­ken

Baby Ri­ley was born with a hole in her heart – look at her now!

Your Baby & Toddler - - Contents -

“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

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