Why we don’t see Max as a ‘saviour sibling’

It has been a long road for the Matthews family since Megan was diagnosed with the rare illness Fanconi anaemia when she was three.

Now nine, the youngster's life has been saved by her younger brother Max, who was born after IVF embryos were tested to find a tissue-match so that his stem cells could be used to for Megan's treatment.

The high profile case of the Matthews, from the South Wootton area of King's Lynn, has reignited the debate about the ethics of 'saviour siblings'.

Critics of the process believe it is wrong to create a child for the benefit of another, regardless of 'the need'.

But the Matthews, Katie, 33, and Andy, 40, insist this has never been an issue for them, as it was always their intention to add to their family, and as they knew they would have to undergo testing and IVF anyway, it simply made sense to find Megan a tissue-matched sibling at the same time.

Megan's mother Katie says: 'I don't like the phrase 'saviour sibling'. We had Max because we wanted a third child. To me he's not a saviour sibling but just part of the family we always wanted.'

After Megan's diagnosis, her older brother Stuart, now 11, was quickly tested and found to be clear of the condition.

Katie says: 'There was a one in four chance he would have Fanconi's, but he hadn't and he was not a tissue match.

'At that point, Megan wasn't desperately ill and didn't need a transplant.

'I then suggested we should have IVF to have a healthy baby because we had always wanted more children. We were put forward for funding to see if the NHS would fund us for to have IVF to have a healthy baby.

'They said while they were there, they could also test for tissue type so they could keep the umbilical cord and stem cells to help Megan.'

So, 18 months later, in October, 2008, the Matthews began with the IVF process. After testing to ensure the six embryos were free from Fanconi anaemia, they were also tested and two were found to be a tissue match.

They were implanted and on July 22, 2009, Max arrived two weeks ahead of his due date.

Katie says: 'I know people have their opinions, but then people have different opinions on everything.

'The professionals interviewed us at length to make sure we were doing it for the right reason.

'We did what we felt was right for us and I'm sure if people were put in the same situation as us they would do the same.

'I think people that know us know we have done it for the right reasons and that we have got Max because we wanted that third child.

'There's not been too many negatives.

'We don't have much family and our friends have been fantastic.'

The family are still travelling once a week to Addenbrooke's for tests to ensure there is no rejection or complications following the bone marrow transplant, but so far Megan has recovered well, and hopes to return to school in South Wootton soon, as well as her beloved dancing classes in tap, ballet and modern with the Watlington School of Dancing.

'She's really looking forward to Christmas but really, really looking forward to getting back to dance lessons. She used to miss lessons but always tried to go as much as possible and hasn't been able to go since June,' says Katie.

But most of all, the family are looking forward to living a normal life in 2011.

'Megan's never really known what a normal life is and it will be nice to get Max out to toddler groups because we've been quite isolated with Megan not being able to go out and about.

'There's a special bond there between the two of them. That's partly because ever since we got back from Bristol and the transplant they have spent the past six months together.'

While the Nottingham clinic and the Bristol Royal Hospital for Children have been in the headlines due to the procedures, the family also particularly want to thank the Queen Elizabeth Hospital in King's Lynn.

Before the transplant, Megan was having to visit its Rudham ward regularly for her blood and platelet transfusions.

Katie says: 'All the staff on Rudham are just amazing. We were up there twice a week even when she was well and they are like an extended family to us.

'Megan has to ring them quite regularly to make sure they are all okay and she does miss them terribly.'

As for all the media attention, Katie says they were warned by the IVF clinic it would be a big story, but did not think it would generate the column inches it has.

The popular author Jodi Picoult brought the ethical issue of saviour siblings to a wider audience with her 2004 novel My Sister's Keeper.

Now made into a film starring Cameron Diaz and Alec Baldwin, it tells the story of 13-year-old Anna, who sues her parents for medical emancipation when she is expected to donate a kidney to her sister Kate, who is dying from leukaemia. Anna was conceived in order to harvest blood from her umbilical cord in order to use in treatments for her older sister, Kate. With the help of a lawyer Anna fights to be able to make her own decisions regarding her medical treatment and the donation of her kidney.

The fact that parents make decisions about donation and the medical procedures a saviour sibling will undergo, is why some opponents cite the process as ethically wrong.

They argue that you wouldn't be able to force an adult to provide a transplant if they were a match, so why should it be any different because it's a child?

Fears have also been raised over the psychological impact on a svaiour sibling and how they could feel as they grow up and realise the implications of them being born to help save an an older brother or sister.

Recommendations have been made for saviour siblings to be carefully and closely monitored and Katie and Andy, a machine operative, intend to be as open as possible with Max, who is now 17 months old, about how he saved his sister.

Katie says: 'We will tell Max about it when he's old enough to understand. There are also facilities at Bristol Children's Hospital so they can talk him through it whenever he has questions.'

Katie, who used to be a nanny before she had to give up work to look after Megan, revealed the couple would also love to try for another child.

She said: 'We would to have IVF because we wouldn't risk having a child with Franconi's, because it wouldn't be fair on anybody in the family.

'If finances popped up from nowhere and we could afford a couple of IVF cycles then it would be great to have another one, but I'm not sure if the NHS will fund the testing again that would need to be done.'

The Matthews family's journey:

Doctors initially tested Megan's brother, Stuart, only to find he was not a match to treat his sister against the effects of Fanconi Anaemia, a rare and inherited disease which predisposes to cancer.

The Matthews carried out a worldwide search for a donor, but without success. In early 2007 they started the process of trying for a third child, and knew they would need to use IVF and Pre-implantation Genetic Diagnosis (PGD) to ensure the baby did not have Fanconi anaemia.

It was suggested that they tried the CARE Fertility Group's Preimplantation Tissue Typing (PTT) programme, which would also mean any new baby would be a tissue match for Megan.

The couple underwent a single round of IVF at CARE Fertility in Nottingham to produce six embryos which were then tested for the disease and a possible match. All tests could be carried out in-house after CARE Fertility and Genesis Genetics opened the UK's first dedicated PGD laboratory.

As part of the procedure, the six embryos were biopsied so a single cell could be removed for testing.

Of these, just two were found to be free of the disease and a tissue match. Both embryos were then transferred to the mother, five days after egg recovery, and a pregnancy test 18 days later proved positive.

This embryo resulted in the birth of a healthy brother, Max, for Megan. His cord blood was collected and he later proved to be a tissue match for his sister.

When he was a year old, a small amount of bone marrow was taken from his hip, because doctors did not have enough stem cells to carry out Megan's transplant. Following chemotherapy and radiotherapy to destroy her unhealthy bone marrow, Megan received the new stem cells from Max during an hour-long operation in July.

The Church of England's view:

The Venerable Jan McFarlane, Archdeacon of Norwich and spokesman for the Diocese of Norwich, said: 'Any parent put in such a situation is going to do whatever they can to help their child. And clearly it's an emotive subject. But sometimes, as human beings, we need to step back and consider the consequences of our actions from a bigger perspective than the immediate and the personal.

'The Church of England has been raising some of these 'big questions' regarding 'saviour siblings' over the past few years. Are we treating such children as a commodity rather than as an individual who is unique and valued for who they are rather than what they can provide?

'What might it mean for a child to know that they were conceived for a purpose, and had that need not existed, neither might they exist?

'In what ways, negatively as well as positively, might the relationship between the donor sibling and the recipient be affected? Ought the donor sibling be able to give consent?

'Obviously these big questions need to be balanced against the chance of offering life to a very ill child - and there are certainly no easy answers. But sometimes the question needs to be asked, just because we can do something, should we?'

How the science emergend and is regulated:

The world's first Pre-implantation Genetic Diagnosis (PGD), combined with Human Leukocyte Antigen (HLA) matching was in 2000, with a boy born in Englewood, Colorado. The transplant used only the blood from the placenta and umbilical cord. The blood was given to his sister as a transfusion.

In the UK in late 2008, Parliament agreed that Pre-implantation Tissue Typing (PTT) was an acceptable form of embryo testing. PTT offers parents the chance of conceiving a child who is a tissue match with their older sibling. A tissue-matched donor who is a close relative of the recipient often means that treatment of the blood disorder is more likely to be successful than with a tissue-matched unrelated donor.

PTT uses the same technique as preimplantation genetic diagnosis (PGD), but involves testing the tissue type of the embryo. In many cases, the condition the existing child suffers from can be inherited. In these cases, parents can use PTT and PGD step, to ensure they have a child who is not only a tissue donor for the older sibling, but is also born free from the condition.

PTT is considered by the Human Fertilisation and Embryology Authority (HFEA) on a case-by-case basis. A clinic cannot go ahead with treatment until they have a licence for that case from the HFEA. The way in which cases are considered by the HFEA will depend upon whether or not the condition involved has ever been considered before.

The HFEA can only license the testing of embryos in order to create a tissue-matched child. Decisions about individual donations of tissue from a tissue-matched child are made with the consideration of the Human Tissue Authority (HTA), and the protection of common law.

Cord blood collection is regulated by the HTA, can only occur with the consent of the mother, and must be carried out under a licence from the HTA.

So far, 10 conditions have been licensed by the HFEA for particular families in the UK. These include Diamond Blackfan Anaemia, Beta and Alpha Thalassaemia, Fanconi's Anaemia, and Aplastic Anaemia.