MARVEL WHO GIVES HOPE TO CHILD­LESS MOTH­ERS

From the med­i­cal marvel who’ll pave way for child­less women within weeks...

Irish Daily Mail - - News - WORLD EX­CLU­SIVE From Matt Roper in Sao Paulo

EV­ERY new par­ent looks in awe at their longed-for baby. In the case of Fabi­ana Amorim de Lima and Clau­dio San­tos the birth of Luisa was noth­ing short of a mir­a­cle. For we can re­veal that Fabi­ana, 34, is the mother who be­came the first in the world to give birth us­ing a dead woman’s womb.

To look at baby Luisa to­day — a happy, healthy girl with beau­ti­ful fea­tures and huge brown eyes — there is no clue as to her ex­tra­or­di­nary jour­ney into the world.

But the im­pli­ca­tions of her birth — us­ing a trans­planted womb from a de­ceased donor’s body — will be pro­found.

Per­formed in a Brazil­ian hos­pi­tal, the break­through paves the way for Euro­pean sur­geons to repli­cate the pi­o­neer­ing pro­ce­dure within a mat­ter of weeks. It will give much-needed hope to women who face the ul­ti­mate ob­sta­cle to moth­er­hood.

Mrs Amorim de Lima, who was born with­out a womb, had an over­whelm­ing de­sire to ‘gen­er­ate a baby her­self’ — de­spite the grave risks of the un­proven tech­nique. Her 33-year-old hus­band des­per­ately tried to dis­suade her from go­ing through with it af­ter be­ing told she could die.

‘When my wife dis­cov­ered that she didn’t have a womb, she started to re­search and find out more about the con­di­tion,’ he said.

‘We heard that a woman in Swe­den had had a womb trans­plant from a live fam­ily mem­ber, but it never crossed our mind that this could be some­thing avail­able to us. We found a page on Face­book cre­ated by women with the same prob­lem.

‘So we be­gan to take part in this same closed group and got to know other women who had the same syn­drome. It was great to be able to share our ex­pe­ri­ences and wor­ries with oth­ers go­ing through it.

‘It was through this group that we dis­cov­ered that the Hos­pi­tal da Clin­i­cas in Sao Paulo was look­ing for women with­out a womb to take part in a med­i­cal ex­per­i­ment. They didn’t ex­plain much at the begin­ning, but straight away we vol­un­teered and be­came one of the cou­ples in the run­ning.

‘Ten cou­ples from this group were se­lected, then af­ter many tests found out we were one of the three cou­ples who had been cho­sen.’

Luisa, a curly-haired bun­dle of en­ergy now learn­ing to crawl, turns one next Satur­day — a mile­stone her par­ents once only dreamed of.

‘She’s a nor­mal baby who has de­vel­oped nor­mally,’ says her mother. ‘She breast­feeds, she plays. It’s tir­ing, it’s hard work, but none of that comes close to how marvel­lous it is to have my daugh­ter, and to know that I gen­er­ated and car­ried her. There is no other way of de­scrib­ing her, she is our lit­tle mir­a­cle.’

Mrs Amorim de Lima, a psy­chol­o­gist who worked in hu­man re­sources, learned she did not have a womb weeks be­fore she was due to get mar­ried. ‘I was 28 and I’d never had a pe­riod in my whole life,’ she said. ‘But I’d never gone to a doc­tor to find out why.

‘When I de­cided to get mar­ried I thought it was time to find out what the prob­lem was, and af­ter lots of tests we dis­cov­ered that, al­though I had eggs, I had no womb.

‘There was no chance I’d ever be able to get preg­nant. Back then we’d never even heard of womb trans­plants. Even so, we de­cided to con­tinue with the wed­ding and our life to­gether. My hus­band wanted to adopt, but my heart wasn’t open to that. I wanted to gen­er­ate my own baby, in­side of me.

‘It was im­por­tant to me to have that ex­pe­ri­ence, to get preg­nant, to see my child in an ul­tra­sound, to carry her, to feel her in­side of me and to give birth. It was ev­ery­thing I wanted and it con­sumed me. I was pre­pared to take what­ever risks were nec­es­sary to make it hap­pen.

‘It was a slightly strange feel­ing at first, know­ing that I was car­ry­ing the womb of an­other per­son, who had now passed away. But at the same time it was emo­tional, know­ing that some­one who had al­ready gone could do some­thing so won­der­ful for me.’

Mrs Amorim de Lima was al­ways pos­i­tive. ‘I was ab­so­lutely cer­tain it would work out,’ she said. ‘I was never wor­ried about any­thing, and I wasn’t for one mo­ment afraid of the surgery.’

The cou­ple live on a dreary, run­down street in a poor dis­trict of Guarul­hos, a satel­lite city of Sao Paulo, in south-east­ern Brazil. Their tiny one-bed­room flat is above the home of her par­ents.

On the cor­ner of the street is a makeshift car wash, and a few streets away on the busy main road lo­cals in shorts and flip-flops min­gle among mar­ket traders sell­ing fresh pro­duce and live pigs and chick­ens. Their home has a small liv­ing room with two so­fas, a bed­room and a kitchen. Their sparse liv­ing room is adorned with pho­tos of their daugh­ter.

MR San­tos, an in­sur­ance sales­man for the bank Brade­sco, said af­ter hear­ing of the risks of the surgery he tried to con­vince his wife to adopt in­stead.

He said: ‘They told us they would have to con­nect veins and ar­ter­ies, that it was very in­tri­cate and there could be many com­pli­ca­tions, and that in­cluded the risk to Fabi­ana’s own life. I talked with her about it. My heart was open to adop­tion, but she was con­vinced that it was what she wanted. Her dream was to gen­er­ate her own child, and to achieve it she would do any­thing.

‘So we en­tered into an agree­ment to go through with it, aware of the risks, in­clud­ing to her own life. She man­aged to con­vince me to let her go through with it.’

The cou­ple mar­ried in Septem­ber 2012 af­ter meet­ing as stu­dents at univer­sity. Mrs Amorim de Lima said the years af­ter her med­i­cal di­ag­no­sis were dif­fi­cult as she tried to come to terms with the dev­as­tat­ing news. ‘The first year-and-a-half were the worst,’ she said. ‘I hit rock bot­tom, I was re­ally bad. I thought that I was the worst per­son in the world, that I had been pun­ished by God. How could a woman be born with­out a womb?

‘But we had two op­tions, to con­tinue to be trou­bled by the sit­u­a­tion, or to look for a so­lu­tion. And we de­cided to look for a so­lu­tion. That was the best de­ci­sion I ever made, be­cause if not my baby girl wouldn’t be here to­day.’

They started to read up on her syn­drome, Mayer-Rok­i­tan­sky-KüsterHauser, and joined a group of other women in the Sao Paulo re­gion liv­ing with the same dis­or­der.

In 2015, the group was ap­proached by re­searchers from Sao Paulo’s Hos­pi­tal das Clin­i­cas, look­ing for can­di­dates for the first US sur­gi­cal trial of uter­ine trans­porta­tion. Of ten cou­ples who came for­ward, three were cho­sen to take part — and Fabi­ana and Clau­dio were the first. The hos­pi­tal paid for their treat­ment.

First, she had IVF treat­ment, re­sult­ing in eight fer­tilised eggs which were cry­op­re­served (cooled be­low freez­ing point), be­fore un­der­go­ing the womb trans­plant four months later af­ter the donor, who died fol­low­ing a stroke, was iden­ti­fied.

ONE of the fer­tilised eggs was de­frosted and im­planted into the donor womb. ‘It sounds crazy, but from the mo­ment they called us to talk it through, I was ab­so­lutely cer­tain it would work out,’ said Mrs Amorim de Lima. ‘I was never wor­ried about any­thing, and I wasn’t for one mo­ment afraid of the surgery.

‘I was so de­ter­mined. I wanted a baby, come what may. Why was I so sure it would work out, when ev­ery other try had failed? Be­cause my faith is very strong. I prayed a lot. I asked God to re­alise my dream. And be­cause of that I knew noth­ing would go wrong.

‘But it wasn’t easy. Those two years were a roller­coaster with so many ups and downs.

‘The worst was the emo­tional ex­haus­tion and the wait­ing six months for a donor. Know­ing that a fam­ily had lost some­one they loved was ter­ri­ble, but at the same time our prayers of finding a womb had been an­swered.’

She spent 11 hours in surgery, where sur­geons plumbed in the or­gan, con­nect­ing veins, ar­ter­ies, lig­a­ments and vagi­nal canals.

‘We had to a sign a form say­ing we were aware of the risks. I spent the whole night awake, wait­ing and pray­ing. I only re­laxed when it was over and she was back in her room,’ said her hus­band. All the Ro­man Catholic cou­ple know about the donor is she was 45 and had had chil­dren.

‘I re­ally wanted to find out more about her,’ said Mrs Amorim de Lima. ‘We even tried to find the per­son’s fam­ily to know more, to show them what a marvel­lous thing she had done, but we ended up leav­ing it. We didn’t know if it would make things worse for them or not.

‘The doc­tors as­sured us that the baby doesn’t take on any­thing of the donor mother, noth­ing. Her struc­ture is all mine and her fa­ther’s.

‘Preg­nancy is a trau­matic time for any mother, be­cause there are so many things that can go wrong and ev­ery­thing seems so frag­ile. And for me it was just like that but a thou­sand times worse.

‘I thought I’d never feel as anx­ious as dur­ing the six months we were wait­ing for a donor to ap­pear, but be­ing preg­nant took it to an­other level en­tirely. Al­though I felt sure that ev­ery­thing would be okay, it didn’t stop me wor­ry­ing when I had a bad turn or when I hadn’t felt her move for a while. My hus­band was con­stantly check­ing my belly, he wor­ried much more than I did.

‘Very few peo­ple know about this whole ex­pe­ri­ence, or that I don’t have a womb. We only told a few

mem­bers of our fam­ily, and one or two close friends. You can count on one hand the num­ber of peo­ple who know. We just didn’t want peo­ple to know and give them rea­son to talk about me. We bap­tised her re­cently, we felt it was im­por­tant to do that be­fore her first birth­day. But we couldn’t tell peo­ple just how much of a mir­a­cle she re­ally is to us.’ Thirty peo­ple, in­clud­ing re­searchers and doc­tors, were present at Luisa’s birth last De­cem­ber at the Hos­pi­tal das Clin­i­cas.

Mr San­tos said: ‘The real fear was be­cause this was new, no­body had ever done this be­fore. So my fear was that some­thing went wrong and some­thing worse would hap­pen, and that Fabi­ana wouldn’t leave the surgery room alive.

‘I was re­ally scared dur­ing those hours of surgery, I paced up and down out­side, ev­ery few min­utes ask­ing if it was go­ing okay. And in the hours af­ter the surgery too, be­cause her body could have re­jected the womb at any mo­ment.

‘I was con­stantly ap­pre­hen­sive through the whole process. To be hon­est I only stopped wor­ry­ing af­ter the baby came out.

‘The whole time we lived un­der that pres­sure, is it go­ing to turn out al­right? Will the womb pun­ish our baby? Will she be healthy? Each con­sul­ta­tion we went to, each biopsy and ul­tra­sound, there was a dif­fer­ent fear.

‘Af­ter Luisa was born I breathed a sigh of re­lief for her, but my wife still had to go though a se­ri­ous op­er­a­tion.

She had just had a C-sec­tion and now she also had to have a hys­terec­tomy to re­move the womb. So I was the first per­son to hold Luisa, and the first to feed her. We do want to have more chil­dren but not in the same way, I can’t imag­ine this be­ing avail­able to us again. So we have de­cided that the next child we have will be adopted. I had al­ways wanted to adopt, rather than Fabi­ana have to go through what she did. I want to tell Luisa ev­ery­thing when she’s old. I’ll tell her about her mum’s brav­ery and de­ter­mi­na­tion, of ev­ery­thing she went through to bring her into the world.

SO many trips to hos­pi­tal, more than 100 times we went there. Ev­ery month she had to have a blood test and biopsy, hun­dreds of con­ver­sa­tions with doc­tors and psy­chol­o­gists.

‘It’s such a beau­ti­ful story, and we are so grate­ful for God’s help and all the pro­fes­sion­als who made it pos­si­ble. I don’t think there are many cou­ples who would be able to go through all we did.

‘I will tell her like that, in a very pos­i­tive way, but I won’t hide from her any of the de­tails, even the fact that she grew in the womb of an­other woman who had died.

‘I’m keep­ing all the news­pa­per sto­ries so she can read them one day. I am sure that, more than any­thing, she will be re­ally proud of her par­ents, for them hav­ing gone through all this, and es­pe­cially of her mother who put her life at risk to have her.’ Mrs Amorim de Lima added: ‘Dur­ing the first three months I had the same wor­ries as any mother, es­pe­cially the fear of mis­car­riage. And I was al­ways wor­ried about whether she would be born with any health problems be­cause of the many medicines I was tak­ing. I was tak­ing 14 dif­fer­ent medicines per day, in­clud­ing lots of im­muno­sup­pres­sant drugs.

‘I had this fear that one of the medicines would cause a prob­lem with my baby. There was one time when two hours passed with­out her mov­ing at all, and I be­came very scared. I was calmer to­wards the end than I was at the begin­ning, and the doc­tors re­as­sured me that the medicines wouldn’t cause problems.

‘I also have a strong faith which kept me pos­i­tive. Thank God my baby was born per­fect.’

The cou­ple want their joy to in­spire oth­ers. ‘We hope that many other cou­ples who think they will never have chil­dren will soon be able to ex­pe­ri­ence this feel­ing, too,’ said Mr San­tos.

‘I’ll never for­get the mo­ment she came into the world. The pae­di­a­tri­cian showed her to me quickly then rushed her away to do tests.

‘Then she brought her back and said “Con­grat­u­la­tions, there’s noth­ing wrong with her, she’s per­fect”. That’s when I started cry­ing. I cried for a long time.’

Baby makes three: Fabi­ana Amorim, 34, with hus­band Clau­dio San­tos, 33, and their trea­sured daugh­ter Luisa

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