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Book suggestion for parents with seriously ill infant?

(5 Posts)
WalnutStreet Wed 01-Dec-10 19:54:53

Hello all
I have a dear friend who had twins in June. One is well and at home with the family, the other is sadly still in hospital and struggling with all sorts of health problems (seizures, blood sugar fluctuations, deaf, blind and digestion difficulties to name a few). The doctors call her a puzzle and haven't been able to work out what is wrong, despite the fact that she is in one of the best pediatric hospitals in Germany where they live.

As you can imagine my friend (the Mum) is finding life very hard. She has not yet bonded with her ill twin, and is scared to because she might lose her. She also has the other well twin at home and a 3 year old who she desperately wants to protect from this stress and sadness.

She is finding the roller coaster ride from one day to the next with the baby improving then getting worse, then the doctors saying she won't live to the next saying she will live but will have many developmental difficulties. Feelings of guilt, fear, grief mixed with hope and elation on the good days is really very hard for her to cope with. She is confused and doesn't know where to turn for help in accessing some feelings which she is scared to admit to.

Has anyone got any recommendations for a book on this topic please? ie. Coping with having a seriously child. A self-help guidance book, or even a novel which covers some of the issues might help her to explore some of her feelings and also enable her to feel that she is not alone with what she is going through. She is a book person and I know that this method could be a support to her if there is anything out there.

Thank you to anyone who can help.

ShanahansRevenge Wed 01-Dec-10 22:45:28

This seems appropriate...but I am not an expert...I will say a prayer for your frends baby and for the whole family now.

She has a good friend in you.

hidinginthecupboard Wed 01-Dec-10 22:53:12

I can't help with any book ideas but I know hospitals with childrens units in the UK often have family liaison nurses and counselling services for parents and others have parental support groups run by parents. Could she perhaps ask one of the nurses if they have any suggestions along these lines?

I feel for her, my nephew was very poorly when he was tiny, hard for any parent but must be even harder when you have another newborn and children at home that you need/want to be with. I hope she has some positive news soon.

purplearmadillo Wed 01-Dec-10 23:06:53


I'm not sure whether this will help or not but thought it was worth posting.

I read a book called Fragile by an author called Niki Shisler. It is an autobiography about her twin sons who were born with a serious genetic illness which took a very long time to diagnose. If you google her, you will find out about the story, I would do so first because one of her twins didn't make it. The book is heartbreaking but also very moving and positive, and it does really explain so well the trauma of having very sick babies in hospital and older children etc.

I re-read it when my son was very ill as a baby and although it was traumatic, it did what you say above in terms of helping he explore how I was feeling. I would describe myself as a book person too.

I hope it helps and I really hope your friend's little girl turns a corner soon. You sound like a really caring friend.

WalnutStreet Thu 02-Dec-10 09:10:44

Hello everyone

Thank you so much for your suggestions. The books you recommend are just what I was hoping to find for her. I think they will be just what she needs (I found them and descriptions on Amazon).

And yes at her hospital they have a wonderful Ronald McDonald House which offers the families support and respite during their child's time in hospital. I think that there is counselling available to them there too, though she has very little time to spare. At least when she is nursing one twin and cuddling the ill one, she can read a book. I am a big advocator of counselling and will encourage her to find some help in that direction when she is ready.

I really appreciate everyone's help and prayers. She will be very comforted that others are out there thinking of her, as am I.

Sending good health to you and yours too!

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