With the hope that God was listening to my prayers after the diagnosis that our boy had Down Syndrome (DS), I was determined to
continue to pray for every health check that took place. And as one test followed the next, God started revealing that
I did not need to be afraid. The results of his digestive system came back healthy, his hearing came back healthy, his reflexes came back healthy and although there is a small opening between the top two valves in his heart that happens to 20% of new borns (which will be checked a year later to be sure that it has closed), his heart check also came back healthy. Praise God.
I didn’t tell my partner or anyone else about my prayers to begin with (because I was afraid that anyone would think it was silly to ask for such a radical miracle). I decided for the first two weeks to keep it to myself, but remained faithful everyday, praying that God would protect and maintain the development and health of my boy. When I shared a few thoughts surrounding my prayers with my husband, I didn’t share all of it. I don’t know why, but it was like I felt that if I
kept it to myself, then no one was able to discourage me and I could go on believing for it. I did however, tell close friends and family who also shared my faith that I was praying for his continued health and to meet his milestones so that they could choose to pray for him also. That is, I told them once I was comfortable about sharing our news. This was my biggest fear. How were we going to tell everyone? Everyone assumed that everything was normal.
Because both my partner and I were reserved people, we didn’t just want to post it all over the Internet. But we knew that we had to tell people eventually. All I can say is that it got easier every time we did. We started with close family and then we gradually told close friends as we meet them in person. Everyone was very supportive and loving, but it didn’t bring much comfort to me. I was fighting a reality. It took me a month to admit to myself that I was hurt and felt ripped off because I went through so much, and yet my boy was also diagnosed with DS. When I did come to terms with this, I didn’t feel like God was angry. I felt
his comfort and the pressure of it all lifted away.
Over the next month I decided not to think about our son’s diagnosis. I didn’t want to know how it might affect him. Instead, I wanted to
focus on my lot in life, learning how to be a mum and recover from my cesarean. Back at the hospital, I decided that I wasn’t ready to leave until I could walk down the hallway beyond my room or at least get in and out of a chair with my boy in my arms (which took six days to achieve). I did a lot of reading prior to his birth, but I still had so much to learn. I also struggled for 2 and a half weeks to recover enough from my cesarean before I could change or bath my son because I couldn’t stand for a prolonged time without leaning on something. (It was my mum and husband who took up this responsibility, among other things to help.)
There was also the challenge of trying to express milk regularly, finger feed our boy with a syringe and to keep persisting at teaching him to breast feed. I found it very overwhelming and so did my partner. I was determined to give our boy breast milk though. I really felt that regardless of what some of the nurses said (that babies with DS usually struggled to breast feed due to low muscle tone), I was going to hold onto what one breast feeding consultant said back at the hospital, that my son CAN do it because we saw him do it. He just needs practice. I also decided that he also deserved the health benefits of breast milk, just as much as any baby did – if not more. However, it became harder as his appetite grew. I was warned off bottles/plastics incase he would have trouble going back to breast feeding, but after three weeks it all became too much, so we put my expressed milk into a bottle with some formula and had a great night sleep.
I was surprised to learn that he was able to continue trying to breast feed. Every 1-2 days he showed me that he could breast feed for about 2 minutes and every other time he would start, but could only do so for 6 seconds before pulling off and refusing to continue. Although he was progressing, I was getting frustrated because my milk supply was dropping fast and as another 2 weeks passed, he was drinking more formula and I could only express 10ml at a time. I didn’t want to admit it, but I was close to giving up. It did bug me though because I knew he could do it. He showed me that he could do it, but didn’t for long. I tried to see another lactation consultant but I didn’t know where to go and it seemed like everyone had already decided that I wasn’t worth their time because he had Down Syndrome. However, the hospital heard my frustrations and for my peace of mind, they booked in a meeting with their lactation consultant at 8-weeks-old.
At six weeks, I went to visit the hospital for our son’s 1 month check up. Hs examination went well, however I decided to explain that I think he was having trouble with abdominal pain. I explained that when I would try to breast feed, he would pull away with a grimace, arching his back really far. Then he would tuck he knees up into his tummy and groan. The doctor was quick to recognise the symptoms as
silent reflux (meaning he was vomiting only half way up his oesophagus, before swallowing it down again). He said that his children had it and it caused them a lot of pain, so he prescribed some medication to treat it for my boy. I then asked if this means that my son might be able to breast feed once it gets better? He said it was possible, but he wouldn’t know until the medication took affect which could take up to two weeks. He also said that there is a chance it won’t work at all and after a month, we might have to try another brand. This was discouraging, but I decided to remain hopeful.
The doctor then proceeded to discuss further evaluation of our son’s diagnosis. I wasn’t initially sure what I was being told, but online research gave me a clear understanding.
Down Syndrome is commonly caused by a third copy of chromosome 21 (which occurs in about 1 in 1500 babies). However, our son’s
gene mutation was more unique, known as
Translocation Trisomy 21. This means that rather than an extra copy of chromosome 21, a part of our son’s chromosome 21 broke off and then reattached to another chromosome at conception, before his cells divided which occurs in about 1 in 50,000 babies). More specifically, his gene mutation of chromosome 21 is known as a
Robertsonian Translocation. Although this didn’t necessarily mean that our son was going to be affected by his gene mutation any less than if he had an extra copy of chromosome 21, I remembered back to my prayer in the hospital and was confident that God was at work here. The doctor then proceeded to explain that because he has a translocation we will need to be tested to check if either my partner or myself are a
balanced carrier (which is only the case 25% of the time). If either of us were though, it would mean that any successful pregnancy from here on would have a 100% chance of also being diagnosed with this kind of DS. Considering our past record, I really felt like the odds were against us. It was just more disappointing news that I wasn’t looking forward to sharing with my husband. The next day however, we both visited the clinic and gave blood to get tested.
A week passed and although it was difficult to give 1 ml a day of the reflux medication to our son (because it was extremely bitter), it made a significant difference. Suddenly sleeping on his back didn’t send him screaming, he stopped arching his back when we needed to burp him and he seemed much happier. That night, I also went to feed him before bed but was surprised to find that he was refusing to drink. But he was hungry? I didn’t understand. I kept trying to give him the bottle but he would just spit it out and cry. I then thought that maybe he had gas so I proceeded to pick him up. Suddenly, I noticed him nuzzle across my shoulder. I completely forgot what I asked the doctor earlier about possibly being able to breast feed after his medication kicked in. I tried and sure enough, he proceeded to feed for half an hour. I couldn’t wipe the grin off my face. Praise God. I was so thankful. Although, it quickly occurred to me that I almost lost my supply and didn’t have much to give him.
It took a long time, but with the advice of the lactation consultant and some tablets to help return my milk supply, at 10-weeks-old our boy was fully breast fed and refused to drink from a bottle. I am so glad that
I remained faithful and persevered when others discouraged me to do so. There is nothing wrong with my son’s muscle tone (which I will write about more in another post). He had
silent reflux which could be treated, had someone recognised the symptoms sooner. (Our son was excessively arching his back from the day he was born.)
I may have been celebrating the ability to breast feed my boy, but I was still struggling with the possibility of one of us being a
balanced carrier. I prayed, asking desperately that we could have more than one child. I was reminded of the feeling I had a month ago. It wasn’t fair and I didn’t want to believe that God wouldn’t allow us to have any more children. I started to think about all the odds surrounding our boy.
He was born on Mother’s Day.
1 in 1000 babies have a face presentation during labour.
His father was also a face presentation – however he turned last minute and could still be delivered naturally (something my mother-in-law shared with us after our boy was born).
1 in 1,500 babies are diagnosed with Down Syndrome.
1 in 50,000 babies are a Translocation.
Rather than thinking that the odds were against us this time, I started thinking about how unique our boy was and how
God must have a big plan for his future. I then remembered that 25% of parents who have a child with a Translocation are a balanced carrier and if one parent is, then 100% of further children will also have the same translocation. And there it was. God revealed that we weren’t balanced carriers. We couldn’t be, because then our boy was no longer unique. At that moment, I felt God’s presence and peace.
I was no longer afraid.
One month later and another check up by our son’s doctor included a confirmation letter that our boy was De Novo, meaning that his gene mutation only happened during conception and that neither my husband or I were balanced carriers. Praise God. We can have more children.
Keeping Faithful 