LIHAN’S STORY

I absolutely love being pregnant. I feel that it is the biggest honour as woman to carry and grow a little life inside of you.

When I fell pregnant with our first baby – Ewald – I was nervous but excited. The pregnancy was wonderful – normal aches and pains but no problems at all. The only regret was that the doctor bullied me into a C-section at 41 weeks. Ewald was born on the 4th of May 2012 and he is such a perfect little joy!WP_20150305_048

When Ewald turned 1, my husband and I decided that it was time to try for a little brother or sister. We struggled to fall pregnant. We finally got a positive pregnancy test and we were overjoyed. We went to an active birthing clinic that supports VBAC deliveries, because I was determined to have my baby naturally. We took Ewald along to our first sonogram at 9 weeks to see his little sibling… Only to be told that there was no heartbeat. It was difficult to breathe and face everything that was happening.

I had a D&C that same day. I went into the hospital with a baby inside me, and I left empty. The doctor told us to handle the bleeding after the D&C like we would handle a period. We decided not to wait to try again – we were more anxious than ever to have another beautiful baby. I got pregnant again in my very next cycle. We were overjoyed, but terrified at the same time… A missed miscarriage has a way of ruining all future pregnancies with constant worry and stress.

 

We went back to the active birthing clinic for our first scan at 7 weeks. There was our beautiful, beating little bean! Everything looked perfect. We were relieved, but still not calm. We went back for our 12 week scan – and there was our baby again. The Down’s Syndrome screening looked good and there were no problems at all. Could this be it? Were we going to have our rainbow baby?

At our 18 week anomaly scan, we were stunned at how much our baby has grown. Everything looked great and measured correctly for how far along I was. “You are having another boy!” What great news! We decided to call him Lihan (meaning: God has answered). The sonographer kept going back to his little heart and we thought that it was wonderful that she was doing everything so thoroughly.

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Then came the words… She was worried about his heart. The right ventricle appeared to be smaller than the left.  We had to go and see a fetal specialist to establish what the problem was.

We saw the fetal specialist at 22 weeks. (The 4 weeks that we had to wait was unbearable). Nothing could prepare us for what we were about to hear… As soon as the picture came on the screen, the doctor sighed. Lihan’s chest was filled with fluid (Pleural Effusion). His heart and lungs were being “pushed” by the fluid and were in strange positions. Her diagnosis – heart failure. She wanted us to go and see a pediatric cardiologist to confirm the diagnosis. She also believed that Lihan might have Down’s Syndrome or Noonan Syndrome (often linked to pulmonary stenosis). We had an amniocentesis done. The results came back that Lihan was a completely normal baby. They were however unable to test for the Noonan Syndrome as it is not easily diagnosed.

I have never been as scared as I was whilst we waited for the cardiologist. The scan felt like it took forever. The doctor said that he understood what thefetal specialist thought she saw, but it was because of the fluid around the heart. Lihan was diagnosed with pulmonary stenosis. It could be fixed once he was born, by inflating a “balloon” inside the pulmonary valve to stretch it open and allow it to work properly. It was the first time that we felt like we could breathe a little. He was terribly concerned about the fluid though, and we had to have it drained.

I went 3 times for the fluid to be drained – they inserted a long needle through my tummy into Lihan’s chest and drained the fluid. I saw him trying to turn his little body away from the needle. It was hurting him and it was breaking my heart. The amount of fluid, and type of fluid concerned the cardiologist even more – they drew 37ml from his chest (according to the cardiologist that is a lot of fluid for a new born baby and unheard of for a 26 week old fetus). It was lymph – which had absolutely no explanation and probably pointed to another underlying problem.
In between procedures we received good news, bad news, troubling news, news that filled us with hope, news that scared us… it was a terrible roller-coaster ride…

The doctors came up with a more permanent solution to keep the fluid away, as each procedure posed so many risks for me and Lihan. At 29 weeks they inserted a shunt into Lihan’s chest that would automatically drain the fluid into my amniotic fluid.

This last procedure caused my water to break 5 days later. I was admitted to hospital on strict bed rest. I was in hospital for 11 days and bled continually – the assumed that the blood came from the shunt rubbing against the placenta. On the evening of the 4th of March, things took a turn for the worst. They had to do an emergency C-section at 31 weeks as my life was in danger due to the unbelievable amount of blood that I was losing. They also found a dermoid cyst on my left ovary as they were doing the C-section, and had to remove the entire ovary.

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Lihan was born perfectly weighing 1.913kg. He did not have Noonan Syndrome. His lungs were tiny and his heart wasn’t strong enough. He lived for 3 hours in the NICU and then gained his wings. They cleaned him, dressed him and brought him to my room – my husband and I spent time with our gorgeous little boy.

Ewald never got to meet his brother, but he knows that he has a brother in heaven and that we will all be together again one day.

In memory of Lihan Pretorius (04/03/15 – 05/03/15)

 

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