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Anlie van Aswegen's 13 Year Heart Warrior Journey

“Just before our 10 year wedding anniversary, we got the good news - we were pregnant!” It was the van Aswegen’s first baby, and Antoinette’s first pregnancy went well, “all the necessary sonars and fetal assessments were done and nothing seemed to be wrong.”

Little Anlie was born in Pretoria, 14 May 2008 via C/section, at 38 weeks with a healthy weight of 3.28kg. Just after her birth, her pediatrician said that she suspected Anlie had Down Syndrome. Anlie was admitted to the NICU and received oxygen. “Some tests were done on her and blood was drawn for Chromosome studies,” recalls Antoinette, “for me as her mother, it was a frustrating situation… I am an NICU sister and my baby was laying in the unit where I work with my colleagues taking care of my baby.”

The next day a heart sonar was done on Anlie. “All that I heard was that Anlie had a hole in her heart. I was hoping for a small hole and that it would close by itself… Two days after Anlie's birth, while I was holding her, the pediatrician came and visited. The pediatrician and I had a doctor-parent talk and I received the news that Anlie had a big heart condition called AV-Canal defect, a general condition that may occur in babies with Down Syndrome.

“The pediatrician explained that there is a big hole in the middle of her heart, that there is no septum that divides the heart in a left and right, (red and blue blood mix together), and that Anlie needs open heart surgery to fix her heart.” It was shocking news for Antoinette, “I was speechless, tears were running.” Anlie’s paediatrician planned to consult with a cardiologist and the Chromosome tests come back, confirming that the van Aswegen’s little girl has Down Syndrome.

On 19 May 2008, five days after her birth, Anlie was discharged from hospital with home oxygen and a lot of follow-up appointments. It was on 28 May 2008, that Anlie started with a high fever at home. Antoinette took her to the paediatrician which is when she was admitted into NICU again. They ran blood tests and x-rays, which showed that Anlie had developed an infection.

“IV treatment and Antibiotics were administered,” shares Antoinette, “soon after, Anlie was better but the pediatrician did not want to discharge her, because she started with heart failure, was struggling to drink and was losing weight”. Anlie’s cardiologist visited her a few times while in NICU until the decision was made that Anlie needed to be operated on.

“On 22 July 2008, Anlie was transferred by ambulance to a hospital in Centurion, where she was admitted in a cardiology department. Anlie's open heart surgery was scheduled on 23 July 2008, where a patch would be planted into the heart as a septum to divide the heart in left and right.” The operation took a grueling 5 hours and “was successful, but while the surgeon opened up her heart, he saw that her mitral valve had a cleft in it, which meant possible problems in the future.

“Post operation, there were ups and downs, good and bad news. Anlie still struggled… she couldn’t get rid of the ventilators, SIPAP and CPAP machines.” After two months with a lot of consultations the decision was made to transfer Anlie to Netcare Sunninghill Hospital.

“On 25 September 2008, Anlie was transferred to Netcare Sunninghill Hospital by ambulance and admitted in NICU, under cardiologist, Dr. Kenny Govendragenloo, and paediatrician, Dr. Christa Swanepoel. Blood tests and sonars were done on Anlie. The results were heart breaking. The stitches from the patch had came loose had formed a ASD of +- 6 mm, VSD of +- 3 mm and PDA of 2 mm, another heart operation had to be done on her to fix the stitches, but she was admitted with a ‘ventilator related bug’ in her respiratory system and with a high CRP,” shares Antoinette, “both of these problems first needed to be treated before she could go into theatre.” At the time Anlie was very weak and experienced heart failure again. “She was sleeping most of the time. The personnel were working with her, changing nappies and drawing blood and she did not even open her eyes or cry. It was so heartbreaking to see her like that.”

Anlie’s second open heart surgery operation was scheduled for 6 October 2008. Another 5 hours operation, this time under the lead of Dr Momorare. “They were able to successfully repair the ASD and VSD and also mentioned the mitral valve that had a cleft in it.” Anlie was admitted to CTICU on a ventilator, did very well after her operation. She extubated after two days and just received oxygen. On 15 October 2008, Anlie was “looking well and alert” and was transferred from CTICU to High Care. “She was still receiving oxygen and IV treatment for antibiotics. We were able to visit more and could handle Anlie by doing nappy care and bathing her. We struggled get her to drink, because she was so used to the Ng-tube feedings, which she had been on for 5 months. We consulted with a speech therapist to help. Anlie tried her best with the speech therapist but was not able to finish her bottles in full.” Antoinette shares that she was really trying to twist the doctor’s arm to take her home with the Ng-tube - “I could handle it at home [being an NICU Sister]. After a while of silence the doctor agreed, and we finally went home after 5 months!! Anlie weighed 4.5kg.” The van Aswegen family participated in a lot of OT, physio and speech therapy to assist Anlie in her development.

Constant follow-ups through the years were done at Dr Kenny's rooms and all cardiac medication was stopped. “At the age of 4 years, Anlie contracted RS-Virus, [a common virus that causes infection in the respiratory tract]. This had a negative effect on Anlie's heart, causing her heart to enlarge.” Anlie went home with oxygen and started with blood pressure medication and diuretics. The frequency of their visits to Dr. Kenny increased and he also conducted a couple of sonar investigations to check in on the mitral valve. “He continued his Investigations from 6 months till Anlie was 12 months.”

“In June 2018, at the age of 10 years, Anlie had a follow-up with Dr. Kenny again and we received bad news again… the mitral valve had begun leaking too much, and both the left atrium and ventricle were enlarged.” Anlie would have to undergo open heart surgery once again… “On 3 July 2018, Dr. Kenny did a cardiac catheterization, a 2 hour procedure and the PDA was closed. Sonars and X-rays were also done. Anlie was discharged on 4 July 2018 and Dr. Kenny had planned to follow up with us after speaking to the surgeons. Later that afternoon Dr. Kenny phoned me and informed me that an operation on the mitral valve had been scheduled for 9 July 2018. The surgeons planned to repair the mitral valve with stitches but if there wasn't enough tissue, they would have to do a valve replacement, which has complications of its own… meaning that Anlie would need to drink warfarin daily to prevent blood clots”.

On 8 July 2018, Anlie was admitted into paeds ward for pre-operative care and on 9 July 2018, she went to the theatre. “The anesthetist kept us informed with messages about how it was going in the theatre. The positive message was that there was enough tissue and Dr Mamorare could do a repair on the mitral valve. After 4 hours Anlie was transferred to CTICU on a ventilator. Anlie’s anesthetist, Dr Mamorare and the theatre personnel were very satisfied with Anlie's condition and she was stable.”

The following day Anlie was extubated and made good progress day by day. She was transferred to High Care after five days in CTICU and all oxygen and infusions were stopped.

“On the morning of 15 July 2018, a final heart sonar was done and we got the news that Anlie was discharged. Good news!! Her doctor said "fantastic".”

Three days after arriving home, Anlie started with a fever. “We consulted Dr. Kenny in his room and he prescribed some antibiotics. On 20 July 2018, Anlie was admitted to a hospital in Pretoria with an infection in her wounds. Her CRP count was very high and she started with infusion and IV antibiotics. Every day it went better as the antibiotics started to work.”

By 26 July, all infections were cleared up and the pediatrician was satisfied with her condition. Anlie was discharged and finally back home for good. At her 6 week check-up with Dr Kenny, he was satisfied with her condition and it was decided that only annual check-ups would be necessary.

Earlier this year, on 29 April 2021, at a follow-up with Dr Kenny, “he was so satisfied with Anlie's condition that he stopped all cardiac medication and her next follow-up is in two years time!”

“Anlie is still healthy and energetic. She loves music and to dance and also loves to bake bread with her aunty Sunitha. Anlie teaches us to be positive and full of hope. She is a real fighter, with her warm sparkling personality. She greets and waves to everyone and can easily turn you around her ‘pinkie’. Anlie loves to go to her school, Club 21 and she has a good relationship with her classmates and her teachers.

“Without our Heavenly Father, lots and lots of praying, lots of tears, believing, hope and family and friends support, we would not survive it on our own.

The Lord has shown us a lot of miracles with Anlie.

“A VERY BIG THANK YOU to Dr Kenny Govendragenloo, Dr Mamorare, Dr Christa Swanpoel, CTICU, and High care staff of Netcare Sunninghill Hospital.”

Photographs: Antoinette van Aswegen (shared with permission)


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