Courageous couple make plans for baby's funeral
BRAVE couple Donna and Dave Dickinson have planned their daughter's funeral – even though she is not due to be born until November.
For doctors have told them that little Millie suffers from the Edwards disorder and will be lucky to be born alive.
But despite the prognosis, Donna has decided against a termination.
She says Millie's life will be a "a gift" no matter how short and she will carry on as long as there is a slim chance of meeting the baby growing inside her.
"There is only a slight chance she will survive and the most likely thing is that she will die inside me before she is born," said Donna.
"Even if she does survive it might just be for a few minutes, a few hours, a few days or a few months. In very, very rare cases children reach their first birthday.
"But who says a life that is long is any more important than a life that is short."
Donna, 39, from Whitecroft, learned Millie probably had Edwards syndrome when she went in to discuss her birthing plan at 18 weeks.
Doctors told her tests for Downs had revealed a greater than one in five chance of having the rare syndrome which can result in severe internal abnormalities, which usually include a hole in the heart.
Further tests confirmed Millie had the condition which only gives her a 15 per cent chance of being born alive.
Civil servant David and teacher Donna agonised for a long time and talked to experts before taking the unusual decision to continue with the pregnancy.
Donna said she could not bring herself to have a termination after learning it could last for days, possibly involve injecting her unborn baby in the heart and she would still have to go into labour and give birth.
"It isn't an easy process so there are no easy options," she said. "People are very brave to choose a termination but I know I would not get any peace with that. I prefer the decision to be out of my hands.
"It has been a horrendous decision to make but this feels like a more natural way of doing things. I can feel her punching and kicking inside me and this way there is a small chance I might get to hold her."
Every morning Donna prays she will feel Millie kicking because it means another day towards her due date of November 21.
"Ideally we will be able to hold her, even if it is for a very short time," she said. "We are celebrating her life now because we do not know how long it will be.
"We have talked it through with people and it is going to be very upsetting when it happens so we have made the funeral arrangements already."
The couple have already told their two young children about their sister.
Ella Twigg, from Mitcheldean, was one of the children to beat the odds and lived to see her first birthday. Because of the condition, she was less than 8lbs when she died.
Donna has spoken out to raise awareness of the tests and SOFT, a registered charity advising on genetic disorders whose helpline is 0121 3513122. Contact Donna on msd dickinson@btinternet.com
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by karen, east yorkshire
Saturday, August 07 2010, 5:25PM
“at 22 weeks pregnant we found out that our little man was poorly through his routine scan and at 25 weeks he was diagnosed with mosaic patau syndrome we choose life and to give our little man the best chance we could, i respect every parent that is faced with this decision no matter the path they choose that's because i have have walked this path and understand it disgusts me that people feel they can judge this couple, me and anyone else that as been in this situation when they don't know or understand not even a little bit what they are going through and if you did understand you would know its not just as simple as terminating a pregnancy, this is a child that has kicked that you feel move that you have seen on a scan for me he caused me heartburn and I loved it, the hospital would have had to end his life and I would have had to go through labour, I have met wonderful children that are living happy lives filled with love that have Edwards and patau's my little man didn't make it he was born sleeping at 35 weeks on the 1st July only 5weeks ago it hurts like hell that he's gone to play with all the other angels but I wouldn't have changed a thing, as for planning the funeral before again you don't know what you would do until you are faced with this situation my husband and I discussed all outcome for our little Antony and him passing away was one possible outcome not one that we wanted but one we couldn't change and we discussed the funeral and what we wanted as we was worried that if we left it till after he might not have got the best send off we could give him, I am glad that we did talk about it before because trust me loosing your child is the hardest thing in the world to go through, I would like to thank Donna and Dave for sharing there story with us and send them lots of love.”
by Joe K, Barton & Tredworth
Saturday, August 07 2010, 1:47PM
“'So they've planned her funeral even though there may be a chance of this little girl living for a while? Sounds pretty messed up to me...'
Victoria, Glos
Something that has to be done, Victoria, and as they explained, better done now than later. It's 'messed up' of the paper to focus on it, but what's new?”
by Deborah, Maryland, USA
Saturday, August 07 2010, 1:10PM
“I really hope that the people who posted negative comments never have to go through this experience. Who is to say what is right or wrong - only the parents can make that decision and it is not any easy one to make.
My son was born in 1999 with Trisomy 13 - it is very similar to Edwards and the "prognosis' is the same. His syndrome was not picked up on any pre-natal tests and was a complete shock. He had beaten all the odds and he lived for 36 incredibly precious hours. I cannot say what decision I would have made had it been diagnosed on pre-natal tests - but I know that with my subsequent pregnancy I would have continued even if I received the same diagnosis. I cannot imagine my life without him being in my arms and I would rather that he died inside me naturally than be aborted. My son was stable and peaceful and passed away in my arms and I will treasure that memory forever. The difficult thing with these syndromes is that 2 baby's can have the exact same anomalies and their outcomes be completely different. I'm not here to bash the people who would choose not to continue the pregnancy - I RESPECT any decision made by parents who have walked in our shoes even if it is not the decision I would have made. However, it is always difficult to be judged harshly by people who have the luxury and good fortune of not being in this situation.
I wish Donna all the best and I hope that she finds peace with the decisions she has made for her beautiful Millie - and that she gets her wish of being able to hold her beautiful girl. As with all things in life you have to follow where your heart leads - whether you agree with Donna's decision or not please never doubt the love she feels for her daughter and remember that it is never as easy as it appears from the outside looking in.”
by Susan, Glasgow
Saturday, August 07 2010, 12:08AM
“I am so sorry for the completely unnecessarily negative comments on this item. Children born with this condition deserve to be given the chance of life, however briefly. Its not "messed up" or "cruel and selfish". I suggest that the negative commentators walk even half a mile in shoes of these brave parents before throwing cheap shots on the internet. Stacey, Tracey, Helen, Jeanette, Jo and Pauline - you all have my admiration & love. You are all amazing women xx”
by roxanne, england
Saturday, August 07 2010, 12:04AM
“i fail to see how it would be kinder for a child to be killed in the womb by a lethal injection to the heart than allowing nature to take its course the baby will not suffer when born or when the time comes for the baby to grow his/her wings, victoria you have no idea do you edwards syndrome is terminal to cure no chance for the baby to live for very long, it may be a way for the parents to keep busy and save making desicions when the time comes and it has to be done there and then. anon..... i sugest you read up on edwards syndrome and imagine if you were told your baby may live even if it is for a few minutes would you not jump at the chance knowing your baby would not make it. any mother would rather see their baby alive than otherwise, when i was told my son would be lucky to be born alive all i could do was pray he would be born alive even for a little while, i was over the moon when i found out my hospital were wrong and my son was fine, do not pass judgment on some thing you have no idea on and no idea how it would affect any one”