Nathaniel helps me forget my pain

Courageous Natalie wants to give hope of parenthood to other people with genetic conditions

All parents think their children are special but Natalie Glascott-Tull and her husband Nick have a better reason than most to think this as they celebrate their first festive season with their son Nathaniel. He truly is the child she thought she would never have.

Natalie, 31, who lives in Wallasey, suffers pain every day of her life and has done since she was a child because of a genetic condition called Hereditary Multiple Exostosis. Due to the condition, she develops bony growths which can catch on muscles and tendons, causing severe pain and restricting her movement to such a degree that she has sometimes had to use a wheelchair. The only way these can by dealt with is by surgery and to date Natalie has had more than thirty operations, knowing full well that she faces many more.

Because of her own suffering and because she knew there was a 50 per cent chance of passing the condition on to any child she might have, Natalie vowed never to become a mother.

"I worked as a nursery nurse when I was younger and told myself that would have to be enough," says Natalie, who is now registered disabled. "I didn’t want any child to live a life of pain like I have."

When she met and married husband Nick, he supported her in that decision. But her mother Gill, a registered children's nurse, knew how heartbreaking this decision was for Natalie who loved children. She persuaded the couple to seek advice and genetic counselling with Dr Alan Fryer of the Merseyside and Cheshire Genetics Service, run by Liverpool Women's NHS Foundation Trust.

From him, the couple learned that through a combination of IVF (In Vitro Fertilisation) and a procedure known as Preimplantation Genetic Diagnosis (PGD), embryos of prospective parents are genetically tested and only an embryo free of the genetic condition is implanted into the woman who is hoping to become a mother. Natalie was put forward for PGD which she had at the Free University Brussels, Belgium. The treatment was supported by the Hewitt Centre for Reproductive Medicine and the Clinical Genetics Team at Liverpool Women's. Following one unsuccessful attempt in 2007, the couple decided to have one more attempt. As a result Natalie achieved the thing she never thought possible when she gave birth to her son, Nathaniel, at Liverpool Women’s on July 21, 2011, knowing that he would not be condemned to a life of pain like her.

It had not been an easy pregnancy and Natalie, who was cared for throughout her pregnancy at Liverpool Women’s, says she found it hard to believe she was actually pregnant until she felt her baby kick. "That was such a special moment. I was hoping for a natural birth but towards the end I couldn’t walk because of the pain in my legs and hips so had to have a planned caesarean. But all that is forgotten now. I love being a mum."

Natalie had inherited her painful condition from her father, Alan who was the only one of seven children to develop it. Although she lived a fairly normal life as a young child, the condition then began to take a grip. "It is a silent condition that develops without you realising it," says Natalie who by the age of 11 had to give up most of the activities she loved like dancing and sport, including swimming, because they caused her joints to lock and the only way to unlock them was surgery.

"It affects every joint - shoulders, both ankles and knees and wrists, hips and lower back," says Natalie who spent 18 months in a wheelchair in her early twenties. "I couldn't think of putting a child through all that and this treatment was the only way of ensuring that.

"My husband and I talked about the ethical issues involved. We didn’t want a perfect child" says Natalie. "We just didn’t want to put our child through anything near what I have been through, all this pain and all these operations. I am still in pain every day but Nathaniel is such a joy that he makes me forget it," says this brave woman.

Sadly, Natalie’s mother Gill, who gave her hope and put her on the path to motherhood, died suddenly just before Christmas in 2005 and never lived to see Natalie’s dream come true.

Natalie says the worst aspect of the process for her and Nick was having to travel to Brussels for the implantation where she was in unfamiliar surroundings with staff who spoke French for much of the time. They were bitterly disappointed when their first attempt at IVF in 2007 did not succeed. They had to wait until last year to try again because of Natalie’s condition. "We had to try to juggle between my operations and I had to build up my strength." Resigned to more disappointment they could hardly believe it when they were successful second time around.

Although she believes PGD is now available at one London NHS hospital for women with her Genetic disorder, Natalie believes Nathaniel is the first child to be born in the UK following PGD for Hereditary Multiple Exostosis. She is concerned that it is not more widely available in this country and that people with the condition do not realise that help is available. 

"I want to give couples like us the hope that they may be able to have a child without inflicting a life of pain on them. I want to send a message to them not to give up hope, that it may be possible for them too."

	Natalie and Nathaniel
	Nathaniel
	Natalie