Julia's story
"Immie's birth in June 2002 was violent and agonising; there were no midwives and no ambulance to help us. We rushed to hospital in the car, just in time for her arrival. Only then did I discover I had suffered a placental haemorrhage that might have deprived her of oxygen. After two weeks in special care, she was discharged, and I was advised to 'treat her like a normal baby'.
"Having had my previous child only two years before, I could see that this one was not normal. Immie screamed for every waking hour. She could not breastfeed and would take three or four hours to ingest one bottle of formula, only to end up regurgitating the lot. Constantly ravenous and uncomfortable, she slept fitfully and started to miss milestones - no eye-contact; no fixing and following; no smile. I tried to hold on in there, accept that after such a traumatic birth her development would be slow. As each day passed, my yearning grew - when would she respond to my kisses, my soothing songs and my constant embrace? How long would it take for her to show that she loved me as I loved her?
"Meanwhile, my other daughter, Elinor, was in trouble. Her nursery teachers were concerned that my charming toddler had become sullen and introverted. At home, her tantrums infuriated me, as did any neediness from Jay, my husband. I felt angry with both of them, angry at my inability to console my baby. Back arched, head flung back, Immie screamed and screamed, and I wished she were dead.
"When she was five months old, a neurologist scanned her skull and revealed a big black hole at its centre. Her whole cerebral cortex had been destroyed during the birth. In a way, the scan was a relief - at last we had proof that there was good reason for Immie's misery and I should stop thinking I had any power to heal her. But alongside such rationale went the loss. With the certainty of the scan, Jay became adamant that we would never be able to look after Immie. For the 20 painful years she was likely to live, she needed professional care. I could not accept this at the time, but I had to face the reality of my future as her mother. Parents of other profoundly disabled children advised that I would get very little help. The UK charity Contact a Family says that only 8% of families such as ours get help from social services; it says only 16% of the mothers have jobs (compared with nearly 70% of other mothers). They report lack of holidays, lack of social life and lack of time for able-bodied siblings. According to the campaigning charity Mencap, 80% of families nursing severely disabled children consider themselves to be 'at breaking point'. I reckoned we were probably one of those.
"I didn't want Immie to go into foster care. I couldn't bear to give her to someone else, someone who was a better mother than me. I found articles on the internet showing that a roster of qualified, well-paid nurses was what Immie needed. But our social worker disagreed. An institution was not the right place for a baby, she said; I must give foster care a chance. In the end, I took what they were offering - this gentle stranger called Tania.
"That was five years ago. Since then, things have worked out better than I could ever have imagined. Gradually, I accepted my inability to nurse my baby, that her absence was what enabled me to rebuild my relationship with my husband and my other child. Despite the pressure from social services to have Immie adopted, her temporary foster care was allowed to become permanent. Tania's weekly payment of £140 was doubled in recognition of her skill and commitment. From the outset, she received a much better care package for Immie than I would have had. She has her own social worker, who makes sure there is help at bath-time or for getting Immie dressed. Such everyday tasks are quite something with a big, ungainly child who cannot walk or talk, whose muscles are constantly spasming and whose seizures regularly overwhelm her. She is in and out of hospital all the time with her epilepsy and infections and the general wear and tear of acute cerebral palsy.
"How could I have brought such suffering into the world? For a long time I was burdened by this question. But I think I have found an answer that satisfies me: Immie is an amazing force for love. Her fragility is something to embrace, literally, as it embodies so vividly the weakness we recognise in ourselves. It inspires people to softness and gentleness. Each time I see Tania pushing Immie's wheelchair up the ramp into her van, I marvel at her strength, both mental and physical, her selfless dedication. I can see the huge satisfaction it brings her to do what other people find so impossibly difficult, but still Tania wants to be accepted as just another mother.
"Two years after Immie's birth, I had another child - Beatrice. Now aged three, she adores her 'little big sister', is fascinated by the tubes and the drugs, the wheelchair, the incapacity that makes her a great big rag-doll, ready for cuddling. Unlike Elinor and Jay and me, Beatrice never expected a healthy, comprehending Immie; she bears no sense of loss.
"Perhaps I should have got over the loss by now. In some ways, I have accepted that Immie is as she is; I take her to music therapy sessions; I visit her when she stays at the local children's hospice. Now that she smiles, I can smile too, but I cannot celebrate her in the way I celebrate my other children. Always beneath the surface of my love is the black hole of that scan.
"In contrast, Tania shows me a relationship with Immie that is joyful and complete. In many ways, she is the mother I can imagine being if it weren't for the loss. She is principled about Immie's medical care, trying to keep the surgical intervention and drugs to a minimum. She encourages her abilities, insisting that she comprehends all sorts of things. After five years of this extraordinary extended family, things are getting easier for me. I no longer miss my baby. Perhaps it is because she has reached school-age, the first time we expect independence and apartness.
"Our relationship with Tania has changed too. I recently signed a special guardianship order that gives Tania and me equal legal status as Immie's parents. By retaining parental responsibility, I am formally stating that I want to stay in touch with Immie. This way, she is still my other daughters' sister; my parents' grandchild; my brother's niece. Before Tania gained parental responsibility, she was officially unable to make decisions for Immie; now the law says she can do everything from choosing what she wears to signing medical consent forms. Special guardianship is new in British law. I see it as part of a widening concept of parenting in this country: families are no longer struggling to adhere to the nuclear model; children are growing up in ever-widening fields of influence and care. For someone as vulnerable as Immie, this is really important - she needs as many dedicated parents as she can get. With an increasing number of children such as her being born and surviving longer, I imagine there will be more families 'at breaking point', more people asking for a Tania in their lives. I just pray that they get one."
Tania's story
"One Wednesday morning in November 2002, I had a phone call from my social worker, telling me about a little girl. Five months old and brain-damaged; parents at the end of their tether. Would I be interested in taking her for a few days? Nothing was definite at that point, Imogen was in hospital and her parents might still decide to take her home themselves.
"At 8pm, the social worker rang back. Yes, the baby did need a home for a while; yes, she would come to me, but not until the weekend. On Thursday morning, the phone rang again; how soon could I get to the hospital?
"Imogen is lying in her cot when I enter her room. I sense bewilderment, loss, confusion. Her parents and I size each other up. Who are these people who can bear to part with this beautiful little scrap of humanity? Will they really trust her to me? Conversation is difficult; there are many, many forms to be filled in by the social worker, and I need to know information that is not on the forms. What does Imogen like? What helps her to stop crying? How does she sleep at night? I see a tiny baby girl; I hear about a child who is in constant distress, living in a chaotic cycle of crying, screaming, vomiting and sleeping.
"Imogen stirs; it is time for a bottle. Julia picks her up and gives her the first half of the bottle. She holds Immie away from her body, stiff and tired. Immie slowly takes a couple of ounces, and then it is my turn. Julia passes Imogen to me, and I finish the feed.
"There is something about Imogen. She is determined. She will not be ignored. I have a cloth sling, and this becomes Immie's home. She lies over my heart, suckling on my finger. For the next few months, I wear Immie whenever I am awake.
"Her family visit every other day, and take her home one night a week. We have weekly visits from therapists and specialists. We have hospital appointments, weight checks, health checks, hearing checks. This is hard. Immie screams every time she is strapped into her car seat. She cries in her pram unless she is sleeping. The constant round of appointments and visits are both an intrusion and a blessing - I am rarely alone in the house for hours at a time with a screaming baby. Immie's family know me only as a stranger somehow willing to care for their precious baby. I am interviewed by grandparents; I see people notice my imperfect housekeeping skills; I feel the pain coming off Immie's parents in waves.
"I am aware that I see a different Immie to the Immie her family know. We both see that damaged little baby. Immie's other family are also coming to terms with the loss of the child they thought they had. There is no loss in my sense of Immie, just love, and a gratitude to her parents for allowing me to share this wonderful tiny person.
"Slowly, I start to see changes in her. Then one day, she smiles. It is brief, but it is there. I discover that she will smile in response to a whistle. On Immie's first birthday she sits in her chair and kicks out at some bells, she smiles at the noise they make and opens her mouth wide for some mashed up chocolate cake. Slowly, she is learning that life might be worth living. It isn't easy; her body is stiff and sore, feeding still takes hours, and already the doctors are talking about future surgery. She is still unhappy.
"Meanwhile, the statutory processes continue. I am clear that Imogen has a home with me as long as she needs it, and I am starting to believe that Imogen's parents will let her stay with me. I am also clear that I will not adopt Imogen against her birth parents' wishes. But Immie does not need to lose parents but to gain more: she has extra needs, not fewer. Gradually, we are becoming a parenting team. But then we learn about new legislation - special guardianship orders. With adoption, the legal ties to the birth family are irrevocably severed. With special guardianship, the guardian gains parental responsibility, but the birth parents retain it. We will share.
"In the meantime, Julia, Jay and I learn to relax a little. They take Immie out, visit her at nursery, have her to lunch. Other family members visit.
"Imogen remains profoundly disabled but she has a strong sense of identity. She knows her family, birth and fostered, and gets excited by visits from any of her grandparents. There are things I see Immie do that I know her other family miss out on.
"It takes work, sharing a child. Decisions need to be taken jointly; if her other parents are not around then I need to second-guess them, try to see things from what I imagine their point of view to be. This has been a harder process for them than it has been for me. I have always felt supported by them. I am sure that we do not always see things in the same way. But I am extremely grateful for their ability to see past that and work for whatever is best for Imogen."
· When the Bough Breaks: A Mother's Story by Julia Hollander is published by John Murray at £16.99. To order a copy for £15.99 with free UK p&p go to theguardian.com/bookshop or call 0870 8360875.
