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Hanjo’s Story

My son, Hanjo was born on the 15th of October 2004 in Pretoria, South Africa. I had a ceserean section, and immediately after Hanjo was born he turned blue and where rushed to NICU. We were completely unprepared for the news we got.

Hanjo was diagnosed with Transposition of the Great Arteries and was needing surgery very urgently. They first did a balloon catherisation procedure to open the ductus arteriouses so that the oxygen poor blood and oxygen rich blood could mix. This bought him a bit of time.

Hanjo had his arterial swich operation at 7 days old. It was a very long operation, 8 hours. He was put on the bypass machine twice, during this operation. After finishing of the first time, they found he was bleeding somewhere inside, so they had to put him back on the bypass machine, go into his chest again and fix the bleeding. It was the longest 8 hours of my life.

After this we where so relieved that it was over with. We could look forward and go on with our lives. Then the second shock came!! Hanjo’s blood pressure did not stabilize after the switch and then they discovered Coarctation of the Aorta, where the Aorta was narrowed and he did not get any blood flow to the lower part of his body. The transposition of the great arteries hid the symptoms of the Coarctation so it was difficult to pick it up before.

He needed more surgery. Luckily not open heart surgery, but still. They explained to us that the surgery would be alot smaller than the open heart and that it was very successful. His thoracic surgeon felt that we should wait until January 2005 for the operation because he wanted Hanjo to go home and become stronger for the operation and that he needed the rest away from the hospital.

I was very scared taking Hanjo home, I did not know what to expect. None the less, Hanjo went home on the 18th November 2004, just after he turned 1 month old. It was a very busy time at home as we where in the process of moving to a new house. Luckily my mom was there to help and look after Hanjo. But then my mom needed to go home, and I had to take over. I struggled with a bit of depression in that time, and had to pull myself together very quickly.

One morning, Saturday 12 December 2004, Hanjo did not want to finish his bottle. It was very important for him to finish his feedings as he needed to grow stronger and if he couldn’t that meant something was wrong. Because of the narrowing in his aorta he grew tired quite easily. I called to his cardiologist immediately, (she was on speed dial during that time). She said I should come to hospital immediately. We rushed there and she examined Hanjo. Things did not look good. We called the surgeon and gave him the update, he said we should book an operation immediately for the following Wednesday, the day Hanjo would be 2 months old, 15 December 2004. I was relieved in a way, because I felt so uneasy having Hanjo home, knowing something is still wrong.

My mom rushed back to Pretoria immediately. On 15 December 2004 Hanjo had his COA repaired. Everything went well. Hanjo came out of theatre without a ventilator, which was great. The doctors struggled with his blood pressure, but we where warned that this would happen. After he was stabilised, we could go in. As we turned to Hanjo after washing our hands, Hanjo turned completely blue. He stopped breathing, his heart stopped and he basically went into heart failure!! We where rushed out of NICU, not knowing what was happening, only praying that our baby would survive. We knew God did not bring him so far, just to take him again.

After what felt like ages, they got Hanjo back!!

Written by his mother

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