Hey you. It’s me. I want to talk to you about something. Sit down.
I’ve been meaning to talk to you about this for a while. Okay, here goes.
Please don’t cry. Because it is not. It is not your fault.
You are not to blame. And you are not being punished.
When you found out the horrific news that your sister in law’s baby was incompatible with life, you were devastated. Just like everyone else. It was terrible. At first, the news that he had a likely chromosomal disorder was bad enough. Everyone thought Down’s syndrome. No one suspected Edward’s. I don’t think anyone knew even what it was. We soon did though. Soon everyone knew all there was to know about Edward’s syndrome. And it wasn’t good.
Looking back now you don’t know how she carried that little angel for nine months knowing that if (and it was a big if) he survived the pregnancy, he was unlikely to survive the birth. His little body, brain, heart and lungs were just not strong enough.
Conversation naturally turned to what would you do in the same situation? How could you cope? Everyone felt vulnerable. If this could happen, anything could.
You knew you wanted a third baby. From the minute she announced her pregnancy (before you knew the awful fate), the seed of the idea grew. The idea of being pregnant at the same time was very appealing. And why not? It would be nice to have all three of your children together. Yes – it was a great idea.
Then the news came. You debated whether to go ahead with the plan. How could you? You couldn’t be pregnant at the same time. That would be beyond cruel. But when? After he died? A year later? When would be a good time? The idea of this third baby became an obsession. I know you wavered as you considered the question of what if it happened again? Could lightening strike twice?
You even made a GP appointment and talked through the genetic possibilities of this syndrome running in the family. The doctor said it could not. She added that if you were asking, at the age of 35, whether you should wait any longer to have another baby then her answer was no you shouldn’t wait. Risk factors were only going to increase.
With a heavy heart, you threw caution to wind and you went ahead. It might not happen. It might take months and months. Let’s just see what happens, you said.
Gabe was conceived that same month.
With the joy, came the guilt. You thought how could you do this to a fellow woman, your sister in law, your friend. How could you get pregnant as her baby’s every heartbeat was numbered.
You thought your selfishness was being punished when at seven weeks you started bleeding. A reassurance scan later you started to get a little defiant. This was your baby. And you already loved it. You began to think you didn’t care what people thought.
You started conversations in your head about what you would say to them. How you would break your news – knowing that although they would feign joy and be happy for you (they are such nice people), that you would be breaking their hearts a little bit more when there was not much left intact.
The Gods had other plans. In the end it was easy to tell them. In the end you told them because they were the only people in the world that would understand. Gabe’s 12 week scan did not go well. When the sonographer spent far too long looking at the baby in silence, you knew. When she put down the probe and looked at you, you knew. This was a face you have seen lots in the past two years.
The baby’s nuchal fold was too high. It was a marker. A marker for chromosomal problems.
You were being punished.
Deciding against further tests, you drifted through your pregnancy. The fear and the guilt always there – never far away. You were six months pregnant when your little nephew died after fighting for his life for nine long days. Holding him against your growing bump and your sister in law saying “meet your cousin” was one of the saddest moments of your life.
The guilt was there at his funeral. You felt that you were mocking them with your bump as they carried that little white coffin into the church. You politely changed the subject if people brought up your pregnancy at the wake.
The next three months were difficult, but you couldn’t help getting excited. The scans were not showing anything too severe – you were ready for your little fighter -come what may. Your sister in law was amazing. She said that it was helping her knowing there was a new baby on the way. This eased your concerns even though you didn’t quite believe her.
You felt it was fitting that there were problems from the start. He struggled with his breathing and was very sick that first year. Every time you held his limp body as he vomited out another feed in the dead of night; in the quiet of intensive care when he was on a ventilator; the endless appointments when consultants shook their heads and agreed it didn’t look good, it was there. A whisper. This is what you get for being selfish. For thinking only about yourself.
But I am here to tell you. It is not your fault. You did nothing wrong.
Your sister in law now has a beautiful baby girl. A girl that has already passed your son in terms of development. And you don’t care. Because you love her. And you want the best possible for her.
Just as you sister in law always has for Gabe.
It is not your fault that your baby nephew died and it is not your fault that Gabe is delayed.
IT IS NOT YOUR FAULT.