In the 12th week of my pregnancy in September last year, a nuchal translucency, NT (scan to reveal thickness of fluid accumulation at the back of the foetus’ neck) scan showed that my baby had a NT thickness of 11mm, even though she was only about 4 cm in length (the norm should be below 1mm).
The gynaecologist who did the scan told us that this is an indication that my baby either had a chromosomal abnormality (as in the case of Down’s Syndrome) or structural defect (in the heart or brain). He suggested we do a chorionic villi sampling, CVS, (the equivalent of amniocentesis, but can be done earlier, between 11th to 13th week of pregnancy) to check for chromosomal defects.
The news came as a shock to us, first-time parents, who were so thrilled when we learnt that I was pregnant from the home pregnancy test kit a few months ago.
The thought of abortion ran through our minds but we decided to do the CVS before making any decisions.
The results of the CVS came one week later and it was found that my baby’s chromosomes were normal, 46XX, which also shows that I am expecting a baby girl.
My gynaecologist, Dr Sim, then told us that that was good news but could not explain the cause for the thick NT reading. She said to wait till the 20th week to do a developmental scan to see if we could detect structural problems in the baby. She also told us to be mentally prepared that the baby may self-abort or that we could choose to have an abortion now since it was only the 13th week of pregnancy. We decided to give the baby a chance and wait and see.
In the 20th week, a more detailed developmental scan revealed that my baby’s heart had not developed properly, there was a hole in the dividing wall of the two upper chambers such that it rendered the heart a three chamber instead of a four-chamber organ.
We were referred to a senior paediatric cardiologist from the KK Children’s department to do a more thorough scan of the baby’s heart and he said that “the cardiac function is reasonable”, apart from “a common atrium and an inlet AV defect”, though “the exact problems can only be delineated post-natally”. We asked him the chances of our baby’s survival and if she would have a good quality of life. He said it would be reasonable and the defect was most probably surgically correctable.
At first, we did not know how to react, should we be happy or sad? Should we continue with the pregnancy or terminate it? We kept thinking about it for days.
Finally, we decided to give our baby a chance to survive. By that time, we felt that she was already part of the family and had a life of her own. I could often feel her kick and move inside me.
So after the decision was made, we never looked back. Though we were constantly worried about our baby, about whether she would survive till and after birth, part of us also chose to believe that a miracle would happen – that her condition would go away or heal by itself.
On 17 Feb 2005, in the 37th week of my pregnancy, I went into labour. After 7 hours of labouring pain, our daughter, Chong Yu Shuan Ryanne, was born, at 7.23pm. She did not show signs of distress during labour, nor was she blue when she was born – as babies with heart problems usually are. She was born pink at 3.3kg and 49cm. However, there was a huge lump behind her neck, what seems like a big sac of fluid.
She was then rushed to the intensive care unit and tubes were attached to help her breath. She was also put on a drip and fed through a feeding tube. Though a part of me was worried about the diagnosis of her neck and heart problems, I was also relieved that both of us made it through the labour.
2 days later, she was taken off the respirator and out of the ICU because she was breathing well on her own. We were also told the lump behind her neck was merely fluid and would subside as she grows older.
The worst news
But the worst news came only 3 days after, from the same paediatric cardiologist we saw earlier. He said an echo scan done on her showed that apart from 3 holes in her heart, she suffered from a very rare congenital heart disease, hypertrophic cardiomyopathy (thickening heart muscles). He said the prognosis of such a disease was very poor - some babies die within 1 to 2 months, some may live a little longer. He also said surgery can only be done to close one of the holes to prolong her life but it would not reverse her condition.
We were too stunned to react. When we went home, we cried and felt like our whole world was falling apart. I have always loved babies and wanted one of my own so much. I could not bear the thought of losing my baby.
After we picked ourselves up a few days later, we decided to go ahead with the surgery. Even if it may not reverse her condition, at least we can have more time to love and care for her. But the surgery did not improve her condition, as the duct that was used to close the hole opened up again a few days later. We were devastated and very angry with the surgeons and doctors. They said they “expected it”, given her condition and her high lung pressure.
Then they said there was nothing else they could do for her in the hospital. They can only put her on medication to prolong her life. They said we could bring her home if we wanted to.
Home Sweet Home
So we brought Ryanne home, 48 days after her birth. At first we did not know how to handle her as she came home on a feeding tube. The doctors said she should not suckle, otherwise it would stress her heart and she would turn blue.
So we just told ourselves to try to enjoy her as much as we can and to follow everything the doctors told us to do. Fortunately, about one month later, I was introduced to an ex-nurse by a journalist friend. She said she would drop by immediately to see how she can help us care for Ryanne.
When she saw Ryanne, she told us to take off the feeding tube and try to bottle feed or spoon feed her, since she looked pink and healthy. Otherwise she would always have to depend on the feeding tube. So we did as told. For the first two days, Ryanne would wail and refuse to feed. But slowly, she started so suckle on the bottle and we never looked back since. Although she took her milk in very small feeds, we tried to compensate it by feeding her more frequently and that gave her enough to survive.
We were also introduced to a paediatric cardiologist in private practice, Dr William Yip. He was a kind doctor and said he would help us manage her condition. Even though he confirmed the diagnosis, he also told us to always remain positive.
The days turned into weeks, then months, while Ryanne fought on. She would perspire a lot and was always breathless. Otherwise, she was a happy child and grew to be more adorable and responsive by the day.
Even though the doctors’ warning about her condition and the possibility of her leaving us any time was constantly at the back of our minds, we told ourselves that we must hang on and be positive. We told ourselves we must try to lead a normal life for the sake of Ryanne and to give her as much love and attention as we can.
I also decided to go back to my job, as my husband was running his own business and could afford to spend more time with Ryanne. We also got the help of my mum and a maid to look after her.
Still, it was not easy. Because of her heart condition, Ryanne had to be on medication 3 times daily. She was also more prone to coughs and fevers. Her physical development also lagged and she was the size of a 4-month old baby at 10 months. Socially and intellectually though, she was alert and responsive, always ready with a smile and always keen to learn. She loves it when we sing and read to her. She could also recognise us and many objects at 10 months.
Near misses
When Ryanne was seven months old, she had a seizure episode and was hospitalised for about a week. We nearly lost her because the doctors said her heart function was very chaotic and it could go into failure any moment. But she responded to the new medication and was discharged after a few days. Exactly two months later, she had another seizure episode but this time round, she recovered even more quickly and we brought her home after she was being observed at the A & E for a few hours.
The last lap
But there were signs that Ryanne’s condition had taken a turn for the worst as the oxygen level in her blood has dropped from 90+ to 80+ percent. She also seemed more breathless and tired more easily. But we continued to tell ourselves we would live each day to the fullest for her sake and remained thankful for every day that she is with us.
And she also continued to give us hope. She continued to grow and to put on weight despite her condition. She had also learnt how to sit at eleven months and remained responsive and alert to us and her surroundings. During the Chinese New Year celebrations, she enjoyed herself so much, doing her “Gong Xi Gong Xi”, meeting so many new faces and going to so many places.
On 11 February 2006, we celebrated her one-year-old birthday one week in advance. She enjoyed herself, though she also showed signs of listlessness, especially at the end of the day.
Three days later, on the fateful 14 February, Ryanne passed away in her sleep at around 6pm. She was rushed to the clinic and then the hospital but nothing the doctors did could revive her. Her breathing had stopped, followed by her heart.
As a mother, I just want to say that I am very proud to have her as my daughter. Although my hopes of seeing her walk on her own and to go to pre-school did not materialise, I am happy and grateful to have been able to spend one year of joy and bliss with her.
Ryanne, mummy loves you and will always remember you as my strong and adorable first daughter. Thank you for all the memories you have given us. May you rest in peace.
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