Around 23 weeks, I went with my husband to see our gynecologist to check on my pregnancy.  He said, “I would suggest a 3D scan to rule at any abnormalities”. So when I asked him, “Why?” – (I had not done a 3D scan for any of my other three children) – he said, “well, as you are 39 years of age, we just want to rule anything out”.

Victoria took almost an hour doing the scan. I asked “Why are you taking so long”? “Please let me do my work – I will answer any questions later” she said.  After about an hour she said “everything is ok but there could be a ‘double bubble’” – (whatever that was) – “which could indicate Down syndrome”.  “What in the world is Down syndrome”, I asked?  I had never heard anything about Down syndrome before.  She tried to vaguely explain it, that it was a genetic disorder and to be honest it did not make any sense to us. So we consulted our gynecologist who suggested we do another test.  But it transpired that it could only be done before 23 weeks: it was too late for me to do it.

I remember thinking the scan must have been wrong and my husband commenting that lady seemed a bit crazy.  The gynecologist said we should try another scan a month later.  We went for a different doctor, who, sure enough, put our fears down by saying it looked like he had a VSD (hole in the heart) which normally closes as the baby grows.  The gynecologist decided to line up a paediatric cardiologist to be present at the delivery, just in case there was a problem.  

      

“The baby is fine”

I went through the pregnancy well, except baby Rowan arrived a week earlier, and had severe jaundice. The pediatrician assured us the baby was well.  My husband asked the Doctor “are you sure the baby is ok, because we were told he might have Down syndrome when my wife was 23 weeks pregnant”?  “Oh yes” said the paediatrician, I am sure the baby is ok, no sign of Down syndrome, and the jaundice will clear in 3 weeks – just keep putting him in the sun every morning”.  But I noticed that Rowan was sleeping too much, he could barely breast feed and I actually had to pinch his feet to get him to make any movement. This prompted me to start Googling information about jaundice and an over-sleeping baby. It all indicated that Rowan might have a heart problem. At 3 weeks we went for a check-up before leaving Kampala to return to our home in Hoima.  Again, we asked the paediatrician, and he assured us the baby was ok. 

News from the senior paediatrician

After 6 weeks, the jaundice still had not cleared, and we decided to travel back to Kampala, to the hospital, and asked to see the senior paediatrician.  She took just one look at Rowan and asked, “have you done a chromosomal karyotype test, because this baby has Down syndrome”. She put it so bluntly and I can still remember the sound of her voice. “So what would the test do” my husband asked? “Well it would just confirm the diagnosis and exactly which type of syndrome he has”. I remember crying my heart out that day and taking to a Googling session afterwards. I typed in all sorts of questions- “what is Down syndrome? Can it be cured? How do you get Down syndrome? Is it infectious? Is it a mother’s fault that her child has Down syndrome? Thank God I was able to access quite a lot of useful information. I actually learnt a lot, and still learn every day from social media, more than any Doctor could ever know or have the time to explain.

Next: the heart problem

Two days later, we were booked for ECG which turned out to be another traumatizing session.  The cardiologist gave his report:  “your baby has a very complicated heart defect, he has severe AVSD. I don’t think it can be fixed, one of the valves looks to be way too small.  “What do you mean it can’t be fixed”? He looked at me and went back to check again.  “Maybe, maybe not. But even if you were to try, it couldn’t be done in Uganda, you will have try India or USA, and you would need to do it before the baby turns 6 months”. My husband had a chat with the cardiologist who put him in touch with the Chain Of Hope.  We applied and were told that to get it done privately in the UK would cost about £50,000.  We were unsure if they would be able to support us and were worrying about the timescale, so we made further enquiries. Our family members both in Uganda and UK rallied round and sent us money to support us. My sister in law had a contact in India who recommended Narayana Hospital in Bangalore, where the head surgeon was a friend of a friend.  The cost would be closer to £5,000.

Off to India

We set off for Bangalore.  More tests were done on arrival which suggested the same valve was still too small, “We cannot operate, there is only a 50/50 chance he will survive”. After consultation one of the doctors suggested we give the baby a little more time to grow to see if the valve would also grow. My husband had to return to Uganda for work and to look after the family at home, leaving me in India alone for 6 weeks. During this time I concentrated on expressing breast milk and feeding Rowan with   a bottle. He gained some weight and indeed after 6 weeks we were scheduled for the surgery.  I also fell in love with Indian Spices.  My husband returned to be with us for the operation.

     

Surgery

After some heart-rending moments during the operation, when we were told Rowan may not survive, he pulled through – Thank GOD!  He was three weeks in Intensive Care, with some seizures as a new threat.  We waited anxiously twice a day along with a crowd of others, to be able to visit.  The hospital was amazing – performing ten times more operations per year than the largest one in the UK we had been booked at.  I remember one of the ITU staff taking us aside and saying “its not normal for children to get seizures after a surgery –  we suspect there could have be a brain hemorrhage”. So then a CT SCAN of the brain was done, and “yes there is a little drop of blood we are going to try and stop it, if it does not stop we might consider another operation to remove the blood clot”.  I resorted to praying harder now and tasked all my family members to pray for us. Three weeks later we were out of the ICU. We then returned the following day because of Rowan’s failure to breathe. He was put back on oxygen, for another three weeks… it was a turbulent time!

Rowan’s Down syndrome Awareness Centre

Four months after arriving in Bengaluru, we returned to Uganda with Rowan, to most of my relatives’ and friends’ surprise.  They mostly thought I had been bewitched, that I must have done something wrong, and now God was punishing me. After experiencing all this, I decided to start doing research about Down syndrome, and have now started a Support Centre (Rowans Down Syndrome Awareness Center) to create a platform for mutual support and awareness among parents and relatives who have children with Down Syndrome.

 

After six months, we went to the UK for a check-up on Rowan’s heart by a UK specialist, another family contact of ours. He was amazed at what Narayana Health had achieved, “my team couldn’t have done better”, he said.

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Rowan continues to thrive, is running around the house and says one or two words. His favourite words are “Daddy”, “Bye” and “Dance”. He loves dancing, clapping, and playing with his brother Matthew.  He started walking at 2 years and is steadily gaining weight.  I did a lot of physiotherapy with the help of the physio in our local hospital in Hoima.  We would love to do speech therapy, but lack such facilities in our area.

  

My son has a lot of nicknames and I get many people staring when we go out, but I decided I will keep informing them instead of being offended. Like I did with the nurse who was accusing me of not breastfeeding my baby… “you mean this baby is 15 months? Are you sure you are the mother”?  I calmly said “yes I am the mother, you see Rowan is a special baby, he has Down syndrome and had heart surgery at five months”.  “Oh My God, I am so sorry” said the nurse.  

This is why Rowan’s Down Syndrome Awareness Centre came about and is needed!