The story of Julia

by Miriam Masterson, Dublin

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Let’s start with just before Julia was born—the reason being that a funny thing happened to me about 4 weeks beforehand.

Julia’s father, Timmy, and I were in town doing some last-minute Christmas shopping. We were in Arnotts and, being 8 months pregnant, I was leaning against a railing by the escalator while Timmy browsed through some clothes. I was daydreaming and two women walking by caught my eye. They were probably a mother with her daughter, in her 20s. They caught my eye because the younger woman had Down Syndrome. Nothing unusual about that. But as got the bus home—and not our usual one, but the first that came along (which would mean quite a long waddle for me) who should get on the same bus, only my two ladies from Arnotts. With hand on heart I did wonder for a few minutes about this coincidence, and I have never forgotten it!

It’s January 22nd and I am in labour. We head for Holles St and go straight to the Labour Ward. I scream for the epidural and then sit back and wait. I had an epidural with our first child Sadie who is 4 years of age and fast asleep at home with Nana and Grandad who live next door to us. All is good and we are so happy. We are giddy and having a right laugh. The midwife is a lovely woman and time ticks away. Bang, the epidural is losing its effect and unbelievable pain is kicking in. I cannot take much more and start giving out. Nurse-in.charge comes in and tells me to get my act together and start pushing. That wonderful moment arrives and Julia is born. Nurse is holding my bundle and checking her out. Now she has gone over to the far side of the room and has put her on a table and is examining her again. I look at Timmy. His head is bowed slightly and his face looks funny. He’s very overcome and there is a funny colour to his face. He is quiet and SAD looking? ‘What is wrong, I know something is wrong, tell me, you can tell me’, I say in a very calm but loud voice to get attention immediately. ‘I’m fairly sure I am right, but I think your little baby has Down Syndrome, and I am going to ask the Doctor to take a look for me’, Nurse in charge tells me with huge compassion in her voice. ‘So that’s it,’ I think to myself. God has caught up with me for all my sins. I start telling anyone in the room that it’s fine and everything is alright. Timmy is very quiet, he knew the minute she was born, he knew by her eyes. This is my fault. I am 39 and I am to blame.

I ring around to tell my gang the news, my poor mother is very upset. My sister Liz, who was out the night before, tells me she will come in asap. She arrives with Gina, still a bit hungover, and they have me in stitches as they try to battle nausea and lack of balance. We give Julia a little bath and in time head to the ward. Liz and Gina watch Julia while I have my shower and Timmy goes home to see Sadie and ring his own family. None of those phone calls were easy.

The first four months

I have to keep this part short and sweet as quite simply it was horrific. We found out that Julia had a large hole in the centre of her heart. She could not feed because of this and was admitted to Temple St Hospital for tube feeding, which they would train me to manage. This involves putting a tube up Julia’s nose and down into her stomach. You do a test to make sure the tube has gone down the right way and then connect it to a feeding pump. Everytime I had to do this I wanted to vomit. The morning we were due to go home I was told that Julia had contracted the Rota Virus. A week later she was rushed to theatre to have the infected part of her bowel removed and she spent the next five weeks in ICU fighting for her life. We had her baptised as soon as she had come out of theatre. It was that bad. ICU could do no more so we were sent back to the High Dependency Unit. A few weeks later Dr Duff decided she was ready for a banding procedure which would reduce the pressure on her heart. It would be carried out in Our Lady’s Hospital Crumlin. A team from Temple St would take her by ambulance and we would be informed when they were coming as this in itself would be very involved. All goes well in that operation, but from the previous operation, her bowel had prolapsed and because that was done in Temple St, she had to go back there. So, we were back in the High Dependency Ward again. A couple of weeks later one of the surgeons remarked, ‘Is that child still here, let’s get her back to theatre, reverse the bowel and send her home. The wonderful nurses fought over who was going to give me the good news. I had spent every day in this hospital, with Timmy coming in every evening straight after a bite to eat and a few minutes with Sadie. One more trip to the theatre and three weeks later we went home. When I say I cried during this period, it just does not do justice for the pain and grief I felt in my chest every day. I had to stop the car more times, not able to drive with tears blocking my sight! After begging for the truth, I was told that, yes, she could very well die and she was a very sick little girl. I fought with God so many times and tried to take up smoking again—that just made me feel sick.

However, in the end Julia showed us all—she did come home and, very slowly, began to thrive. Our wonderful public health nurse Susie eased our panic at home. The months ticked by and we were on the waiting list for major open heart surgery as soon as Dr Duff reckoned Julia could withstand the ‘big one’. We had glitches along the way, pneumonia and other small bouts, but they were manageable at home. The following January we got the call, but the operation was cancelled at the last minute. A week later we were back and this time we were good to go. The operation was a great success and we were home a week later. Throughout all of this, the fact that Julia had Down Syndrome became less and less important, though not irrelevant.

Now

After two years attending a mainstream playgroup, Julia has just moved from the baby room up to the Montessori room. We are very lucky with this place, and I have total trust and faith in the staff. We are working towards mainstream school, but we live in the present as much as possible. Julia was recently diagnosed with a leaking heart valve, so she is on medication, with regular check-ups. This has knocked me back, as we could be facing more surgery—you just have to put it to the back of your mind. I would be lost without Timmy—I do not know where he gets his positive outlook from—my other beautiful daughter Sadie, my deeply treasured parents, Betty and Ernie, my wonderful family popping in and out daily, the mums from Cheeverstown who I meet regularly—and all the great friends I have made through the Dublin Branch of Down Syndrome Ireland and the NIID at Trinity College..

Julia puts manners on me every day. She is full of love for everyone and has the biggest smile going. What more could I ask!