Mom and I are not that close. We do not call each other very often. We do not share recipes or secrets. She is not the type who has strong emotional manifestations. Still, she never hesitated to lay on the operating table for my sake. I get that. Now. I would do everything in my power to make my children feel the same feeling they give me when I hold them in my arms. If they wanted me to.
Mom is a very rational woman. Pragmatic. She does not ruminate and ponder over things. And when she decides for something, she does it. As in the case of donating her uterus. I do not possess any of these characteristics. Nevertheless, I inherited a lot from my mother. The persistence. The pride. A little laziness. But also a great drive. An inner strength.
I do not remember asking the question. She, on the other hand, had followed my interest in uterine transplantation and the research at Sahlgrenska for a long time. She was well prepared. When the discussion about donation came up she just answered “of course”. And then there was no more to it.
Nowadays we share something bigger than recipes and secrets. The bond to my children and the adventure of how they were born. We don’t talk about it that much, but it’s there. We both have in common that we have removed the uterus. And although the circumstances were completely different, there are several things we can relate to. The scar on the stomach for example. And when we get the repetitiously question if we feel less female because the uterus is gone, then we both shake our heads laughing.
The ethical debate in the medical world, whether it is right to ask a mother to donate the uterus to her daughter and the risks involved in surgery, is not my place to comment. Such questions can only my mother answer. This is entirely her words:
“I did not feel forced to participate. And never at all, I felt pressured. I had plenty of time to think and opine, but above all to mentally understand and realize what awaited me. When my daughter asked the question I had already decided. However, I don´t think I would have donated to anyone entirely unknown – On the contrary, I would like to have some bond to the one I´m donating to.
To completely understand what an operation means, I don´t think anyone does. I had never been operated before and we were furthermore the first couple to do the operation in this research, so it was obviously difficult. There are risks and consequences in everything you do and my attitude for the most part is that you can not worry about them. Otherwise, there is not much to live for. In addition, I felt a great confidence in the medical team. I had a gut feeling that this will go well. It will be successful and it will be a baby.
If it had not worked, then we at least would have tried. I don’t miss my uterus at all. I have given birth to three very lovely daughters and I do not need it anymore. And considering the inconvenience I had with bleeding in the end, I was just glad to get rid of it. I do not regret it. I have donated something nice and got a good “reward” in the sense of two wonderful grandchildren.
I am for uterine transplantation. The more operations that are done, the safer they become. There are many who struggle with their infertility and who need this surgery. I want more people to know about it. “
I wrote that I’m grateful. Which is true. I have a lot to be grateful for. Survival of the cancer. The transplantation. My family. But I do not go around and feel particularly unique or special. It’s just not me. I´m not one of the coolest or smartest on this earth, but it’s okay. I’m happy if I get to be an average Joe. Just ordinary.
There is some kind of expectation (conscious or unconscious, what do I know) of someone who recovers from a fatal disease (or something else traumatic) that you should be so grateful to be alive. To live every day like it’s the last and not take anything for granted. In a relatively short period of my life, I tried to live up to it. Grab hold of my dreams and try to make sure my life was as eventful and meaningful as possible. Tried to enjoy every single moment. Eventually, I landed in that it just made me more stressed. So I stopped pushing myself. Stopped doing what others thought I should do. I realized that I´m the happiest when I have no demands or expectations on me. Quality of life for me is being able to do nothing. Regardless of cancer.
Going from infertile to having a greatly desired child holds the same idea of gratitude. I’ve heard so many involuntary childless women say “If I had a child, I would never complain or whine over it’s hard”. I was the same. Until I had children. I can not answer how mothers in a similar situation live their lives, but I myself can not live up to the picture that, as (formerly) involuntarily childless must be grateful all the time. I get angry at my children. I am sometimes tired, sad or something else that makes everything feel overwhelming. Then I whine. That does not mean I’m not grateful for what I have.
The entire process from start to where we are now, we have gone through by taking one step at a time. Tried to keep us on earth and done what makes sense to us. I’m not going to start doing anything else now. This blog is not a long song of praise and neither is one of those mom blogs where everything is portrayed so idyllically. I want to write my story as it is, not what it suppose to be. Apart from we have gone through a uterine transplant, our life is very ordinary. Just as we want it to be.
Illustration from the book "Underbara underliv". In it there's everything you need to know about the female genitals.
Let´s set a few things straight regarding the womb, right from the start.
The uterus is the amazing organ in the woman’s body in which a fertilized egg clings and for nine months develops into a child. No bigger than a fist, it is embedded in the pelvis – behind the bladder and next to the tubes and ovaries. The entrance to its inner is a really thin canal called cervix. About the canal, you might as well say exit, when in fact there are more things that go out than in – discharges, menstruation fluid, a kid.
This with the cervix baffles a lot. Some mistrust it for a wide open path from the vagina into the uterus. However, the cervix is not a sea lock, which transports larger things back and forth as desired. With big things, I mean of course penis. It is completely impossible for a penis to get into the uterus. End of story. This because of the shape of the cervix, but also the function of the vagina. The vagina is elastic both deep and wide to accommodate most penises, thus not allowing them to get any further. Furthermore, in majority of women, the uterus is bent forward at almost 90 degrees and if you try to bend an eroded penis it will break.
Conclusion: When transplanting a uterus from the woman’s mother, it is not the same thing as the man having sex with his partner’s mother. According to the internet, there seem to be some people who believe that.
The uterus is a shelter, a place to grow in. The plant substance itself, i.e. the embryo, is already produced (in my case in an IVF lab) when it settles in the uterus. In other words, the uterus has no effect whatsoever on the child’s hereditary factor. My children are a product of me and my husband. Not my mom. This, it seems to be some opinions about as well.
Without the uterus – no child
I understand. The uterus is not an organ that you generally need to pay much attention to. It is either seen nor feels particularly frequent. It is therefore no wonder that you don´t know so much about it. What amazes me, however, is how many people that are not aware of this: without a uterus, there are no children.
Over the years I have been forced to endure a number of embarrassing harangues from people who mean well, but who do not have a clue what it means to not have a womb. People who I barely know, who call me after my cancer surgery and instruct me to “relax, it will be a child when you least expect it”. My boss at the publishing company I work for (in the corporate group, they issue one of Sweden’s biggest women magazine?!) try to convince me that a private hospital in Stockholm fixes everything when it comes to infertility. ”Just apply for care there and then you’ll see you get pregnant”. Pointlessly, I try to explain that there is no chance in the world you´ll become pregnant if there is no uterus.
The woman’s internal genitals work in perfect symbiosis. The ovary that releases the egg, the fallopian tubes that intercept the sperm and make sure it will become an embryo. And the uterus that allows the embryo to develop into a child. All parts are equally important. If any part would have a malfunction, there are several treatments for both the woman and the man. Stimulated ovulation, sperm injection and in vitro fertilization are three examples of such treatments. Since involuntary infertility is classified as a disease, you are actually entitled to these treatments.
But when there are problems with the uterus (malformations, adhesions, absence, you name it), then it´s a stop. Then there is no treatment. Until now. Sahlgrenska University Hospital made it possible through uterine transplantation. Not a private hospital in Stockholm. In other fertility issues, I´m sure they are great.
I’m not good at being sick. (Is there anyone who is? How do they do?). I close myself. Wear an invisible blanket around me and bite the bullet until I’m capable enough to take the world in again. Being in bed at a hospital and in the hands of healthcare staff do something to me. I feel small and diminished. It all reminds me too much of the past. When I had cancer and they took my uterus. I was the only 25-year-old among a bunch of elderly ladies who sat in the tv room and read gossip newspapers, seemingly untouched. I thought my life was over. Never before have I felt so lonely and devastated.
This time it’s different. The operation is voluntary and not traumatic in that way. Literally, it may give me another life. Yet, it’s hard. I don´t recognize myself. My eyes are blurry and my brain is sluggish and syrupy. I strain myself to formulate words to people around me. The body is stressed. Speeded. The pulse rises to the double as soon as I move. I have never tried drugs but I imagine it’s like this when you are high. I feel chased. Would like to strap on a pair of running shoes and run as fast as I can. Although I’m one of the world’s laziest people. The troublesome shaking does not want to stop, the worst is in the legs. In order to get some rest, I force myself to the bed and firmly press down the legs flat against the sheets. Restless legs have got a whole new meaning.
The doctors are looking for explanations for my and S’s condition. Some symptoms are typical side effects of the drugs and will ease. Others, such as shaking, are puzzling. They consult and give the drug manufacturers a call. The explanation they finally agree on is that we have received a bad batch of the medicine given in high doses at the time of surgery to knock out the immune system. Mats Brännström, chief of the project, is worried. A whole world has become aware of his life work and the pressure is enormous. And we are worn-out and depressed at the hospital. He has nightmares involving a black lump of organ coming out of us and he tells me ”You have to pull yourself together”. Han calls my partner and asks him to bring magazines and other things that will distract me. And then he sends up the team’s psychologist.
We have talked about this though. What happens to the mind and body when moving from a healthy state to a sick. The other patients at the ward have usually been sick from kidney or liver disease for a long time and usually recover a few days after the transplantation. Often, the donor is worse than the patient. Now it’s the opposite. My mother is a patient at the women’s clinic, but walks relatively unconcerned across the hospital area to visit me a couple of days after the surgery. A day after that she is released from hospital. I continue to vomit and shake.
Against the pain from the surgical wound, I get headache pills. Against the shakes they give me morphine syringes. First intravenously. Then straight into the legs. When that does not work, I do the thing that gives me a fairly relief. I walk. I walk manically in circles, at first in my room and later on in the corridor. Lap after lap, I walk in my Foppa slippers, day and night. Sleeping pills have no effect. Eventually we are allowed to go outside the ward and down to the main entrance. In the hospital area there is a construction site. Building dust and sensitivity of infections are a bad combination for us and we need to wear a mask and a chunky coat over our clothes. S comes back from a trip to 7 eleven, crying. She feels like an alien that everyone is staring at. I don´t have the energy to care. Steeled, on the verge of resigned, I keep my fake smile on and try to do what is expected of me. No nurse likes a grumpy patient. It feels a bit embarrassing to be down and gloomy after an operation like this one. I swallow my medicines, drink a lot from the can and write down how much I pee and eat. Trying to get as much food as possible in me, though only the smell of food makes me nauseous. I avoid the day room for that reason. Also, I do not want to risk having to talk to any of the other patients. It feels extradited and tricky to get me into a discussionthat I have a transplanted womb. I let them believe I’m kidney or liver transplanted.
With the uterus it is all good
With the uterus itself however, it’s all good. That’s nice. Every day, Dr. Liza comes in and measures the flow of the uterine arteries. They are the ones who provide the uterus with strength and those which the entire operation is depending on. On the ultrasound scans you can see how my vagina is once again connected with something bigger. A room for a child. Inside the uterus is the endometrium, the layer whose thickness will be decisive for an embryo to get caught. On the ward where we are located, a special examination room has been set up for us. On shaky legs we crawl up in the gynecological chair to do the first biopsies on the uterus. Those who show how the uterus really feels. It looks good. Mats Brännström is relieved. I long for home. I need to get out of my shell and lick my wounds in private. Feel like myself again. Then I can also be happy about the operation.
On the twelfth day, I´m finally released. I go home. I breathe out. Five days later I’m back in the hospital. I have a fever and a diffuse pain in the abdomen. The body shows all signs of a rejection.
”Are you listening?” My fellow sister in the other end of the room, whom I have not yet talked to, increases the sound to the television. On the news they talk about the uterus transplantation that took place this weekend. Two women in their 30s who got new wombs by their own mothers. An operation that Sahlgrenska University Hospital is first in the world with. One woman (me) has previously got her uterus removed after having undergone treatment for cervical cancer. The other woman (S) is born without uterus. “The operations were successful and all patients are doing well.”
My surgery was Saturday. Today is Wednesday. Sunday, Monday and Tuesday have gone by in a one big blur. First in a recovering room where I disappear in and out of a haze. Each time I wake up, it beeps frenetically in the monitors above me and stressed nurses instruct me to take long breaths in an oxygen mask. They try to put a bigger mask on me, a CPAP, which will remove the fluid in my lungs. But the mask works badly and gives me panic disorder. Ultimately, I refuse.
Somewhere in the same room is my mom. I´m too groggy to register it though. A day after me, S also rolls in. Same frenetic beeping. Our general condition is worse than expected and the original plan to relocate us to the transplant ward is thrown-away. Early Monday morning we roll with blinking monitors and oxygen masks to an intensive care unit. To protect us from potential press and computer hacking, the instructions from the team are to keep records by hand. We go under the radar. When my loved one calls to say good night, they do not know who to give the phone to. I’m not in the system.
In a broader perspective, it´s however soon clear who we are. We are those “complicated” patients who are part of a new research project, which many consider to be “unnecessary”. One of those operations that falls under quality of life and not life saving. Which will take time and money from those who really need care. And we are treated accordingly. When the nurse from the transplant ward comes down to provide us with medications she is faced with skepticism and resistance from the other nurses.
The intensive care unit is neat and modern and the equipment is better than the one in the recovering room. I can´t get away from the CPAP. Even here they come running as soon as I wake up and force the mask on me. I pretend I´m sleeping. S has left the unit before me. The anaesthesiologist from the team prescribes me tranquillizing to endure the sessions in the mask. I close myself mentally and disappear somewhere where I’m not newly operated and fragile. Locked in the mask, I count to 30 as I’m told. I dream that I’m drowning and fight the air fervently so that they do not forget to release me.
On the fourth day
The press conference was yesterday. I wonder what kind of questions the doctors got and how the spirit between them was. Now everything is on the news. I only half listen to it though. I´m having trouble imagining the world outside the hospital window, even less that it’s me they talk about on television. It´s just after eight o´clock and the nurse is messing about in the room. Sets the medicine cup and the canopy with water on the bedside table. Replaces the drip and clears the catheter. Checks the dressing on the stomach. The scar from the navel and down to the pubic hair senses weakly underneath. It crosses the bikini incision from my cancer surgery. I have IV drip for nutrion, catheter, oxygen halter and is connected to a telemetry for increased heart rhythm. I feel queasy and is alternately freezing and sweating. I´m dizzy and breathless. As if I had gone a wrestling match and can´t get the body to rest. The fact that the entire abdomen is numbed and it´s difficult to move, I´m in some way used to. The body and I have been prepared for the pain that would come, the one we remember from before. Same operation, but reversed. I crawl up to a half-seated position to swallow the tablets and lay down again on the side. S calls out from the other side of the room, asking me how I do it. Her body is unable to turn in any direction, and she has slept on her back all night.
Into the room sweeps another nurse. Talking loud and blatant. She seems to have made efforts to ensure that she will be taking care of us today, usually she is not at this ward. Don´t know if I´m delighted or uncomfortable. She flatters and chatters about how big this is, how courageous we are and that she knows a thing or two about involuntary childlessness. I wonder whether the behavior is so professional of her but hummar polite now and then. The effect of the tablets is reminiscent and the increasing nausea makes it difficult to be nice. But this nurse does not seem to notice anything. S walks past the bed, faltering and bent forward, with the IV drip rolling in front of her. The nurse continues to talk. I lean over the bed and vomit in a sick bag. In my head I hear the words from the news broadcast “The women are doing well but are tired after the surgery”. S and I smile of recognition towards each other. It’s all a very strange situation we are in.
1998. In a patient room at the Royal Hospital in Adelaide, Australia, a 25-year-old woman has just been told she has cervical cancer – stage 1B. Angela. The prognosis for her survival is good, but doctors Mats Brännström and Ash Hanafy want to remove her uterus. Mats: “That means you can´t have children”. Angela: “But can´t you transplant a uterus the day I want children?” The question is simple and the solution to a large infertility problem should be as simple. Why can´t you transplant a uterus? Bothered by the question Mats is forced to reply: “No, that’s not possible. Maybe in the future”.
2012. The moment they all been waiting and training for, are here. In an operating room at the University Hospital in Gothenburg, a group of surgeons and nurses are gathered for a time out. Customary before an operation is to go around and present themselves. So even today. Main operator Mats Brännström says: “Today we are going to do a uterine transplant. The first.” They nod gravely. Embrace the moment. The patient on the operating table is a Swedish woman who, at age 25, lost her uterus in cervical cancer – stage 1B. Me.
September 15th 2012
The night before the big operation, they meet. Gynecologists, transplant surgeons, everyone who are surgically involved in the project. After 15 years, it´s about 15 people. Now they run everything through one last time – the procedures, who will do what and who will be in each operating room. The one with the donor or the one with the patient. They talk about media. So far, Sahlgrenska and the team have kept a low profile, but they can not be sure that the press has got news about Sweden’s first uterus transplant and that they will be outside the hospital the next morning. Niklas Kvarnström, one of the transplant surgeons, calls the patient and inform her their strategy. If the press is watching the main entrance, she should call one of the nurses who will let her in through the back door.
They arrive early. Some of them change clothes in a building further away and then walk to the operating rooms through the culverts, just in case. It is Saturday and the corridors are empty. Just as planned. The research should in no way interfere with ordinary activities. The staff who work in the aftercare this day have previously notified their interest in working an extra shift.
Gynecologist team one initiates the operation. Well skilled, they lay the first cut. A so-called midline cut that extends two centimeters above the navel. The woman, the patient’s mother, is a 52-year-old healthy woman who has given birth to three children vaginally without complications. An exemplary donor. X-rays and rigorous studies show that uterus and surrounding vessels are equally exemplary – whether that is true or not they won´t know for sure until they open up. Do they hold their breath?
They inspect. The uterus is of normal size and slightly backward. On the left side there is an active ovarian and inside is even an follicle. The right ovarian is somewhat atrophied. Of the relatively common muscular tumor myomy, there are thankfully no signs of.
A grueling work begins. The space in a woman’s pelvis is surgical minimal and the uterus is clamped between urethra, urinary bladder, fallopian tube, ovaries and intestines. Around these weaves a fine mesh of a variety of thin blood vessels. Just as with an archaeological excavation, all this must be carefully distinguished and separated. The longer vessels the better. Vessels that will accompany the uterus to the other body. They divide, dissect and cut.
In the operating room next door, they prepare the patient. The device they use to cut the tissue is slightly malfunction and the device is replaced. Between the bowel and ovaries, the gynecologist team two detects some adhesions, from the patient’s previous surgery. Then when the uterus was removed. The cavity after the first uterus has also caused the bladder and rectum to slightly collapse and the ureters are glued to the pelvic wall. Further down behind the bladder, more adhesions are detected. Thicker ones. They search for the ligaments that the uterus usually is attached to. Stubs that after the removal have been degenerated but is now marked with threads for the new uterus. Two on the side and two back down towards the rectum. Pelvis vessels from before are also picked up. On them they place small rubber bands for easier access later on. In wait of the transplant, the open wound is covered up.
It takes time. Much more time than they expected. The veins in the donor’s abdomen are twisted and collapse easily. A little naive, the team has assumed that the operation should be almost identical to the procedures on the baboons, perhaps even a little shorter because the anatomy of a human being is bigger. It did not. Womb transplantation is an advanced affair. But the surgeons are tough. Concentrated. They talk and laugh. And when it gets critical it becomes dead silent. Three at a time they take turns in the surgical wound, burning and holding. Outside the operating rooms, in a barren waiting room, the patient’s partner waits. Trying to make time pass he watches movies on the phone – first one, then several. He even falls asleep a couple of times.
On the arena, the transplant surgeons finally enter. They stand for a while and reflects the operating wound before they finish the releasing of the vessels. The uterus is taken out. Thoughtfully they place it on a separate table where it is flushed and iced. When it disappears from the room, the donor’s team of gynecologists remains. Closing the wound. From here it’s like any other operation. Gently they place a final hand on the woman’s body. The work of her and the gynecologists has now been completed.
They sew. Ligament. Veins. Arteries. Then the final solemn moment remains. The clamps that block the blood flow during the operation are loosened and the blood is released. The uterus gets a nice pink colour in just a few seconds. On the right side, the flowmeter measures about 15 ml per minute. On the left about 60 ml per minute. The transplant surgeons take a break and the patient’s gynecological team sews the suspension ligament and the vagina. When the transplant team attends once again, the flow reaches approximately 50 ml on the right side and 70 ml on the left side. They are pleased with that.
When the patient is rolled out of surgery, it is night time. The team of around 15 people elected to perform the world’s first womb transplant from mother to daughter has been operating for 18 hours. It’s like a relay race. Methodically and tactically, they run one lap at a time, hour after hour. Like persistent runners they are trained to endure lactic acid and mental stress. The adrenaline that pumps during the long waking hours keeps them alert. Afterwards a wave of exhaustion rinses over them.
A clear September day has passed them by entirely. In the cool autumn darkness, they now pull the jacket close to the body and slowly walk across the parking lot. At the car they stop for a short while gazing out to the horizon where the sun soon will rise. They take a deep breath and sigh satisfied. It is done.
In just a couple of hours, they will gather here again. For the next operation. Tomorrow, another woman will be given a uterus from her mother.
On the fifth street from town, in the apartment at the top, life has been transformed. As in a fairytale. Among keystrokes and trumpet solos is the sound of little feet running around and the laughter from tumble and play. And on the floor there are toys – cars, bricks, books and dolls. In our castle of love, music and semi strong values, lives today a prince and princess, the most beautiful of them all. We gave them the names Henry and Vera.
The enchanting life as parents is everything we dreamed of – and a little bit more. It is looking in your child´s eyes and see yourself. Be totally floored. Of love, of responsibility and of fatigue. It is to rediscover life and revive your inner child. Crawl on the the floor, play hide-and-seek and tickle til you lose your breath. It´s long walks in the sunshine and be in the present. And push a stroller in snow and grit uphill. Life as parents is reading bedtime stories and rock your child to sleep in your arms. Stomach-ache, toothache and a comfortless shaking until late night. It is two expectant kids in the back seat on a road trip. And screaming from start to finish for ten miles. It´s kisses on the mouth. An unconditional love. A constant worrying. Life is someone holding your hand across the street. Someone who calls us mom and dad. The best words there is.
Life as parents is amazing … (And sometimes a bit frustrating)
Uterus transplantation. Who knew…
At night time, when the serenity descends in the apartment and you get devotional silent with your thoughts and feelings – that’s when it becomes extra clear. What a divine life we live. The journey we have made. And everyone we give thanks to.
Mats Brännström and Ash Hanafy – two men who discovered the lack of treatment for women who have no uterus and their grief of not being able to become a mom. And who decided to do something about it. Sticked to the idea for so many years despite all the skeptics they met.
The team that Mats built up… Randa Akouri, the woman who made the entire treatment possible through her animal studies. And as a result of the project, studied to become a doctor. Her determination never ceases to amaze me. Pernilla Dahm-Kähler. If I in another life would become a doctor, I want to be like her – strong, dedicated and with a heart of gold. And a damned good surgeon. Michael Olausson and Niklas Kvarnström who did what no transplant surgeon hade done before. Sewed in a transplanted uterus. Anders Enskog, the anesthetist who sat at my side during the transplant. And the birth of my first child. Lars Nilsson, the man who have made more IVF treatments than most and who gave us Henry and Vera. César Díaz-García, gynecologist. Liza Johannesson, gynecologist. Jana Ekberg, neprologist. Hans Bokström, obstetrician. Stina Järvheden, psychologist. There are a lot of you who have cared about me and who will always have a place in my heart.
Everyone related to the above – who supported and wet for their loved one´s job. Our happiness is as much because of them.
All nurses – operating nurses, transplant nurses, IVF nurses. Nurses at the care unit. Midwives. The amount of people that helped me in my weakest moments is countless.
People I have not met until recently, like pathologist Johan Mölne. Who kept me safe all the way, with the help of all biopsies.
Postgraduate and medical students who have been and will be coming. Paving the way for a new future.
My mom… Who gave me the greatest gift of all. Her uterus.
The list of all who contributed to giving us our miracle life can be done long. A simple ”thank you” to these people is not enough in a long way. But it´s the word that best describes gratitude. Thank you. For every smile and progress that my children do, I will always remember you <3
Uterus transplantion. Who knew… After all those years of research, I was in the right place at the right time. It happened to me.