Every new Mother’s worst nightmare is finding out there is something wrong with their newborn baby. For most of us this situation will never occur. But for a percentage of Australian parents, this nightmare is a reality.
My friend Merran’s nightmare became a heartbreaking reality when her baby boy Ryder was just 2 days old, and her world was turned Upside Down.
The first red flag there was something wrong with Ryder was apparently when Merran had difficulty breastfeeding him.
“I was blissfully unaware till we were leaving hospital 2 days after Ryder’s birth,” says Merran.
“They were quite obviously delaying us and waiting on a doctor to do the final check. Whilst the doctor did the final check Ryder started to choke and he was moved to NICU.”
“An hour later the Neonatologist questioned whether she could talk to me without Ray (Merran’s husband) present. (He had gone to take the 2 older boys to my parents).
“I said yes not knowing what was coming next. She wanted to take blood and have it tested as she believed Ryder “displayed features relating to a chromosomal abnormality”. I still had no idea what she was talking about and just said “sorry?” and she said “I believe Ryder has Down Syndrome”.
Merran recalls this exact moment as “the first time I have ever physically felt my heart break”.
Naturally, Merran asked about the features the doctor was referring to. “The slanting of his eyes, the shape of the back of his head, the shape of his nose, his muscle tone, a large gap between his big and second toe” replied the doctor. Later that night Merran’s precious little 2 day old baby boy, Ryder, was diagnosed with a congenital heart condition called Atrioventricular Septal Defect which is basically a hole in his heart where blood flowed freely through the chambers. The very next day Ryder’s test results came back positive for the genetic condition called Trisomy 21 which is the most common form of Down Syndrome. He has 47 chromosomes instead of 46.
“I was devastated and cried for the first week of his life. I had to overcome my own prejudices as I had little knowledge of how wonderful Ryder’s life could and would be”, says Merran.
“I received wonderful advice while still in the hospital and remember being told it is OK to be sad. It is OK to mourn the loss of the baby you thought you would be taking home. I felt angry this had happened to us. I went through a full cycle of emotions. I was also told I would go through all the emotions as though it was a “death” and would eventually come out the other side with acceptance. I was also warned this could take up to 12 months to finally accept and realise it is all going to be OK.
“I also felt guilty I had not tried to get the blood test ‘somewhere’.”
Merran, Ray and their 2 boys were living in Abu Dhabi when Merran fell pregnant for the third time, and were there for the majority of the pregnancy.
“Testing is not readily available (in Abu Dhabi) possibly due to termination being illegal. I had to actually push for them to measure the nuchal fold and there was no indication of any abnormalities after they did this. By the time I returned home to Australia (armed with 7 scans taken throughout my pregnancy in Abu Dhabi) and continued my prenatal care it was too late for a blood test or amniocentesis. I was reassured after all previous scans were checked and all future scans were given the all clear”, says Merran.
“I am neither a spiritual or religious person…I am more of a “life just happens” kind of person. But I am now more of the thought that things do happen for a reason.”
After Ryder’s diagnosis “we had counselling in the hospital and one thing the doctor mentioned was the tests are not 100% accurate. Time after time pregnancies are terminated due to a high risk of Down Syndrome and they are ‘normal’ foetuses. But call it Mother’s intuition I knew right from early on something was ‘different’. I just thought I must have been having a girl.”
I ask Merran the hard question of how she thinks she may have felt had she known Ryder’s diagnosis while she was pregnant. “Initially being told would have been devastating but I would have been able to research, talk to parents, and have questions answered. I would have had months to adjust to his diagnosis and be prepared. But sadly 95% of pregnancies with a high possibility of Down Syndrome are terminated. I cannot 100% say I would have been the 5% or the 95%. 6 months ago I knew little of Down Syndrome and since Ryder’s birth my mindset has changed and I am excited and positive about his future.
“Prior to having Ryder, I had an outdated view on the lives of children and adults with Down Syndrome. Many Down Syndrome children lead ‘normal’ lives within the community, leave home, marry, have children, hold down a job. My thoughts were never negative towards children and adults with Down Syndrome, I just did not have knowledge of the lives they led.
“Recently I was in town for an appointment when I noticed a Down Syndrome boy walking around near the cafes (he looked about 18). He was smiling and looking around trying to meet the eye of anyone who looked. I was saddened that most people averted their eyes and would not make eye contact. I stopped to say hello and the smile I received was priceless. 6 months ago I may not have made the time to stop and talk.”
Thankfully during these past months Merran has been able to rely on the wonderful support of family and friends.
“After the initial shock friends and family have been wonderful. Any shock, doubt or worries have never been conveyed to me although I am sure they would have had these feelings. Close friends have always known the right thing to say at the right time. Without my parents support and assistance it would have been difficult. They were able to look after my 2 older boys when Ryder remained in hospital after his birth and also during his 2 week stay when he had his open heart surgery. Ray’s family turned to their religion and prayers during this time which I respect as their way to deal with the situation. We have also been humbled by the support in our community especially parents and teachers at Hunter’s school.”
But of course despite all the help and support in the world, Merran is still a Mum whose heart is breaking for her helpless child, while trying to keep it together for the rest of the family.
“I break down in private….when they are all asleep, when I am in the bath or shower. I have good days and I have bad days. Trying to ensure all my boys have quality time with me is hard. There are lots of moments of Mummy Guilt! Ryder receives a lot of my attention with his condition and Hunter and Jett voiced their jealousy. I have started weekly ‘dates’ with Hunter and Jett where I take them out alone to a place of their choice. They look forward to their special time each week.”
Ryder is very lucky to have 2 big brothers that will no doubt look out for him no matter what and are adjusting too, to their little brothers condition.
“Hunter, who is 5, understands Ryder has a condition called Down Syndrome and will look a little different and reach his milestones a little later. Hunter has already developed a protectiveness towards his brother which I am sure will only intensify through the years. Jett, who is 3, has little understanding. We are all learning sign language to communicate with Ryder which we have been told is beneficial to his communication. The boys are enjoying learning to sign and are quick learners!”
As well as dealing with Ryder’s Down Syndrome diagnosis, there was also Ryder’s heart condition that needed to be treated. “At the time of Ryder’s diagnosis of a heart defect, we were advised he would require open heart surgery when he reached 5kg (about 6 months old) to repair the hole”, Merran recalls.
“Over the coming months Ryder was monitored closely by his paediatrician and cardiologists. When there were serious concerns his heart was failing quicker than he was gaining weight, Ryder was booked for surgery at Westmead Children’s Hospital.
“On Friday 30th March 2012, at just 3.8kg and 16 weeks old, our beautiful little angel underwent a 6 hour operation, where his heart was stopped for 40 minutes, and had 2 patches placed in his heart to repair the hole. Although the operation was more complicated than initially expected, our wonderful surgeon was pleased with the results. Ryder has been left with minute leaks where the patches were placed and hopefully these will close over time.
“Unbeknown to me, at the time we found out Ryder had a heart problem, Ray was making deals with his “higher powers” that if Ryder could be OK he would happily trade his life. Monday 1st January, when Ryder was just over 2 weeks old, Ray suffered a heart attack…..”
Thankfully Ray pulled through… as if this family had not been through enough already.
And as well as the emotional demands of caring for a child with Down Syndrome and a heart defect, there are the physical and financial demands.
Sadly Merran and her family, and many other families in their situation receive very little financial support.
“We receive a carer’s allowance of $55 per week. I spend hours per week driving to various appointments in Sydney and Newcastle to see Ryder’s paediatrician and cardiologists. I have lost count of the number of doctors visits, blood tests, chest x-rays, ECG’s, echocardiograms. A quiet week I have one appointment, a busy week, 4.
“Ryder will also start a weekly visit for Early Intervention where he will be involved in therapies to ensure his intellectual and physical development. We, like most families, rely on 2 incomes and currently with all Ryder’s appointments it is not feasible for me to have a job. So financially, it is a struggle.
“Emotional support however, has been wonderful. I had visits from a social worker in the hospital who laid bare all the options after his birth (which included putting him up for adoption). I suffered from Postpartum Depression with both my previous pregnancies so right from Ryder’s diagnosis at 2 days old we had support. After I left the hospital I had home visits from ACE which assists women with Postpartum Depression. This was one of the best things that helped me to heal. I also left the hospital armed with loads of information and contact numbers and websites for Down Syndrome associations.”
But while families with a Down Syndrome child or relative educate themselves on the condition, the greater public often have little or incorrect information/knowledge on the condition.
Merran recalls her first public negative experience after Ryder was born:
“I remember my first venture out to get a haircut when Ryder was about 6 weeks old and Ray was not long out of hospital after his heart attack. (Yes, this family have gone through more than enough!) I did not have time to drive the hour and back to my lovely usual hairdresser so thought I would try somewhere locally. Not much chit chat took place and I was happy with that as I was enjoying the peace and quiet. But when I was having my hair washed I had to endure a conversation between my hairdresser with another….basically it went along the lines of “I bet I have a retard like a Down Syndrome kid” followed by “What causes it” “It is old women having babies”.
“I managed to bite my lip for the next 30 minutes and just made it to the car before I broke down. I did not say anything and even now I would not. The difference now is I would hold my head high knowing I have been given a gift they would never appreciate. I have since learnt that these types of people cannot be changed. Their ignorance comes from both a lack of knowledge and even sadder, a lack of care. People stare then avert their eyes when I am out with Ryder but most of the time it is just curiosity.”
We can only hope that these types of people are a minority and as Merran says, “I hope for a future where children like Ryder are truly accepted.
“Where people see his abilities and not his disabilities. I want him to fall in love. I want him to marry. I want him to leave his mark on this world. I want him to be kind and receive kindness in return. But more than anything, I want him to be happy.”
Merran, I cannot thank you enough for sharing your story. Ryder is lucky to have such a wonderful Mum and family who love him unconditionally. To follow Ryder’s journey Merran has a created a Facebook page Upside Down, please click HERE for more information. Please follow and support and help Merran raise more awareness of Down Syndrome, because angels are made with 47 pieces.