We found out during the Easter holiday break last year that we were going to have another grandchild. Our daughter in law dropped the little photo from the first ultrasound scan onto the breakfast table, on the Thursday before Good Friday. Wow, I was thrilled; I have always wanted heaps of grandchildren, their first child Damon was about 15mths old at this time. I was SOOOO excited, so absolutely happy, so full of hopes and plans and expectations and all that good stuff that goes with a much wanted baby announcement.

Then about 3 weeks later my mother unexpectedly died what a shock! On the day of her funeral, after everyone had gone, and it was just my husband and I at Dad’s place, I rang my Daughter in law to thank her for letting me have my son for support on that day. She had been having a bit of a run with morning sickness and so stayed home with Damon. I asked her how she was, and she said “Oh not too bad considering”. “Considering what” I asked, “Tell you later, you have enough on your plate now” she said……. Feeling a mild panic I pressed her to tell me.

The last scan had showed fluid round the heart, and they were worried about something to do with the spine, and there were further tests to be done. She sounded terrible.

So the tests were done and the results came back definite full Trisomy 13.
I had NEVER heard of it, Carolyn gave me a printed run down of what it was and what it meant, and what the medical staff were ‘encouraging’ them to do – and I went into shock to put it mildly. There must be a mistake, there must be!!!

The tests showed it was a boy and I asked then to give him a name, they had already decided to do this, so we began to think about our precious baby Luke. I was well aware of the ‘abnormalities’ that could happen, I trolled through the web site daily, I read all the stories, I made myself look at all the pictures … I thought that the only way I can deal with this is to know as much as I can about it and then I know what I am facing.

While I was going through this personal hell, my lovely son and daughter in law were being harassed to terminate. They asked us what we thought – well what did we think! When we really thought I mean REALLY thought, about it we could see that it was going to be a horror road for them and that ALL we could do was support them, in whatever decisions they made. We told them we would support them emotionally, spiritually, physically and if necessary financially. They needed a lot of support as they faced the battle of getting proper hospital and medical care, and trying to find some support for a Trisomy baby to be given the same chances as other babies.

I began to stress about the alternative of having a child live that has major problems, all the basic physical things that would have to be done, the help that would be needed, the disruption to life as we knew it. Then my mind would flip over to the alternative, having a brand new baby die, or worse still be born dead. It seemed that there was no light on the horizon anywhere.

Then Steve and Carolyn told us that they had decided to see it through to the end or as far as Luke was able to make it. They said ‘when we began this pregnancy, we naturally assumed that we would give this child every chance to be whatever he could possibly be, and we see no reason to change our thinking now’.

We organized to go onto broadband internet, which gave me 24hours a day connection with Steve and Carolyn, vital, as they live in another state to me. It was absolutely vital for me, I needed the close contact. We were walking a very fine line between grieving for what was happening to us personally, and trying to do what we could to help and support our ‘kids’ while they were out there on the front line having their hopes plans, dreams, emotions etc etc just chopped up, as the general medical opinion was – well its Trisomy so that’s that, not worth the trouble, not worth the expense --- hell this is a human life!

We were in contact constantly with the MSN type thing, there were days of absolute hopelessness and tears and total misery, and then there were days when we realized that this little baby was fighting to be whatever he could be. We prayed for a miracle, I reminded God that he was the inventor of chromosomes, so I could see no reason why He could not ‘fix’ the problem, I believed with all my heart that God would ‘fix’ it and that a perfect baby would be born and how wonderful it would be for everyone. Carolyn kept telling me, he could not live with the problems he had, but I was in the ‘disbelief’ stage of my grief, and I could not accept it.

Steve and Carolyn just wanted to bring him safely to birth, they wanted to hold a live baby in their arms, they did not want to be cheated out of that joy…… their prayer was answered. For 58 hours and 13 minutes they had their beautiful live baby boy, a great big robust 8lbs and 5oz. He was the biggest baby in the NICU and the sickest.

When I saw him for the first time the morning after he had been born late at night, my heart just melted. I could see the cleft lip and the cleft palette, but it did not matter, this beautiful big baby with the golden wavy hair was MY GRANDSON! He was perfectly beautiful yet he was so very imperfect in his little body. I learned that love is not about looks, or ideas or expectations it’s about people. We love perfectly when we love ‘even though’ instead of loving ‘because’.

Because this baby was attached to all sorts of monitors no one got to hold him. After the decision had been made to allow him to ‘go in his time’, he was taken off the monitors and then his parents were able to hold him, and they did, all night till he left them early the next day.

It was absolute hell being at home knowing that he was dying and knowing that we had promised to give them the space they needed to be with him for whatever time they had. Hell, knowing that our kids were going through the worst experience of their lives and we could do nothing to help them. Hell knowing that, that lovely boy was leaving and I had not ever held him in my arms.

Later that day they bought him home for 24 hours, they were black round the eyes from stress and their faces were just so sad. My son bought his little boy into the house and gave him to me to hold, all wrapped in his hand embroidered rug with his mother and fathers hand prints on it to hold him for ever. I cuddled that little body and felt my heart truly break – my loss, my son’s loss, my daughter in law’s loss, our family’s loss.

Carolyn had the worst of it, she had labored for a day and a night to give birth, her body was all geared up for a live baby, milk etc etc…all hormones raging, and then no where to go. It was very hard for her to deal with all of that physical stuff let alone the emotions.

As a parent I think the worst sight I have seen was my big strong son in his best suit carrying that little white casket. His face was just a picture of pain. I will never know where both Steve and Carolyn got the strength to help the rest of us who were grieving….. they were in so much pain but were still able to give out to others.

We are now just past the 12 months anniversary of his birth, death and burial and from here I can honestly say that this has been the worst year of my life… BUT I have learned so much, I am not the person I was a year ago, I am stronger, I am much more loving, I know the difference between what is important and what is not., I know about fair weather friends and those who will stick through thick and thin, I know about how valuable time is, I know how precious EVERY life is, no matter how imperfect the shell that encloses the life. I know about honesty, and trust and how wonderful it is when people meet each other on a totally honest level…no rubbish, there is not time for that.

I wish I had never had to go down the Trisomy path, it was very painful, but I have met some wonderful people through the web sites, and our family is much richer because we met a little boy called Luke. Without exception, every member of our family on both sides, who allowed this little boy to come into their hearts has been changed, and blessed to bits. He will always be missed, there will always be a sore spot in our hearts because of him, he will never be forgotten nor the lessons that he taught us. His mission was so short, but he fulfilled it and left us better people that before he came.To my very precious baby grandson Luke Steven Prothero, when I think of you I am filled with a mixture of absolute joy and terrible pain. You are so wanted by every member of your whole family, but as we wait for your arrival tension grows.

Right now as I write this you are safe and warm inside mummy, she will protect you from everything that is possible to protect you from yet even inside there where it as safe as it can be for you something terrible has happened to you and you little life is threatened.

I am hoping you are able to understand love from those close at hand and those of us who are further away. When I knew you were coming I was so excited and readily welcomed you into my heart just like your beautiful big brother Damon. I saw your little photo from the scan, a tiny little person just waiting to grow. When I was told of the problems you have my heart just overflowed with love for you, my arms ached to hold you and I wished with every fiber of my body to be able to fix it all for you.

We have all cried many tears for you and for us, but it seems this is a path we are all walking to the end.

What a lot you have taught us all in these past few months, we all know so much about Trisomy, but apart from that you have taught us lessons of love and patience. You have taught me especially how perfectly beautiful, imperfect babies are, as I read about other babies and looked at their photos I learned that the only beauty worth worrying about is the sort that is in your heart, physical looks are just the outer covering for all that makes a person real.

You have taught me to love without any restrictions at all. You have also taught me that to do this means I have to stick my neck out and that sometimes hurts. I have learned how precious time is, nine months is a long time, but as the time draws near and the danger for you grows I realise how short it is.

I hope with all my heart that there is time for us all to meet you, to hold you and tell you ourselves how much you are loved.

Though I know you will almost certainly never read this for yourself I want you to know how absolutely happy I am that you are coming to be a part of my family. How proud I am of your ability to fight against all the odds and get this far and how desperately sad I am to loose you. Do you know that your name Luke means strong fighter.

You have the best parents, they will move heaven and earth to give you just one more minute of life, they love you with so much love you can see it. They will fight tooth and nail for your existence and quality of life. Your big brother Damon is just wonderful, how he would have loved to have you to grow up with and teach and play. I am pleased that he is so young and will not be able to understand this tragedy till he is much older.

My precious darling child, I send you my love and my prayers know above all how much we will miss not having you in our lives. The sound of your voice, the touch of your hand, the color of your hair and your eyes, watching you grow and learn and being enriched by all of it.

With all my love
Nanna

23rd July, 2006

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The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.