Blog 30 - Your Baby Has a Heart Defect

God knew in His infinite wisdom that I was not going to cope well with this news...that Jess had Down syndrome. I am sure that is why He kept it from me for 4 weeks. By the time I knew I had bonded with Jess and I totally loved and adored her. I shudder to think how I may have reacted if I had been told in the hospital. Though if we had known in hospital we would have been offered couselling and DSAQ would have visited us...so the process of acceptance would have occurred differently.

The weekend after finding out the diagnosis I took Melissa to the shops to explain to her why Mummy had been so upset. She was 6 years old. Within a minute of walking into the shopping centre I saw 2 adults who had DS. A lady was on her own, shopping independently, the other a gentleman was with his mother and was more dependent. I felt a sense of calmness and peace and I felt God's arms wrap around me. He was giving me a vision of Jessica's future. Everything would be alright.

Of course Melissa had no real idea what I was talking about when I explained to her that Jess had Down syndrome - all she cared about was the McDonald's meal and toy that I was buying for her. To her, Jess was Jess, her baby sister...nothing else mattered.

Now that we knew what we were dealing with....knowledge does equal power...power to get educated and help...we bought books on Down syndrome and read as much as we could handle. At first it was very overwhelming. There was so much negative and scary literature, particularly on the internet. We had to look for the positive things that would give us hope for our daughter.

The new parent information pack arrived from DSAQ. Even that churned my stomach. I could not look at all of the faces of the smiling children and adults who had DS. It cut like a knife. I was wallowing thoroughly by this stage in my self-pity.

But as time went on the self-pity lessened and lessened...and acceptance of the situation grew...the attitude changed to...let's see who we can see when we are out who have DS and let's watch them. Meeting and seeing other children who had DS was instrumental in changing my attitude towards DS completely - these kids were playing just like the regular kids. They were in school learning. They had friends. They were happy. Their parents were happy. These kids were loved. Everything would be alright.

A couple of weeks after the diagnosis we took Jess to see a cardiologist. A lot of babies born with DS have heart defects. The cardiologist listened to her heart and could not pick up any murmur. He thought just from listening that her heart was good. He decided to do an ECG just to make sure that everything was fine, but he didn't expect to find anything untoward.

So we lay Jess on the table and he put gel on her ribs and rubbed the probe over her chest. She was a very good baby and just lay there.

Then we heard a word come from his lips, 'Oh.' Silence and you could have heard a pin drop in the room...my husband looked at me and I looked back at him...waiting...waiting...my heart pounding....and the cardiologist looked and looked and looked....pressing buttons on the machine...colours flashing...heart beat lines moving. He kept checking and checking and checking.

The doctor was quiet for what seemed like forever. What did 'Oh' mean? What had he found?

He then turned to us and told us that Jess had an AVSD and possibly a PDA as well. To put simply she had two holes and a shared valve (the PDA would mean she would have 3 holes). She would be needing open heart surgery soon or she would die.

We were stunned! We were worried. We were scared.

It felt like another slap to our already tender faces. No, no, no, this wasn't happening!

But God was there in the situation....We walked out to the reception desk and there sitting there was the mother of an ex-student I had taught. We had a chat about what we had just found out and that helped to ease the tension of the situation. She was what I needed at that exact moment.

My husband and I went home in shock and cried. We also prayed and told God that this was unfair and questioned Him as to why this had this happened as well? Didn't we have enough on our plate?

We were scheduled to see the cardiologist monthly until the surgery occurred.

© 2012 by Jenny Woolsey

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