Tekst: Esmeralda Wybrands
Beeld: Mark Sassen
“Nothing led us to think of thrombosis”
Our Laura, 17 years of age, had just started college to become a designer when she caught the flu. At least, that’s what it seemed like at first. Four days later she died, entirely unexpectedly. She was diagnosed with a massive pulmonary embolism. Her parents Anita and Gerard and sister Melissa tell her story. “Her death is not to have been in vein. Girls and women who start using the pill must be aware of thrombosis sooner.”
Laura always wanted to design chairs and lamps. Even as a child she would say: “Mommy, I want to design a chair for children who are seriously ill.” And so she was eager to start her education as Product Designer during the second phase of her education. During that phase she was allowed to design a chair. How enthusiastic she was! Anita affectionately thinks back to these happy times of her youngest daughter Laura. Laura had known very different times as well. During primary school, Laura was bullied a lot and her first years of high school were also pretty tough.
But meanwhile everything has changed for her. For the first time Laura has a serious boyfriend and she feels socially accepted in school. Together with her parents and older sister Melissa they form a tight knit unity. There is nothing to indicate that their happiness will soon be disrupted in an inconceivable way.
Laura’s father, Gerard: “On a Saturday, late November 2012, Laura came back from a late visit to the movies. She sat next to me on the cauch and enthusiastically chattered about what she and her friends had seen. Finally she said: ‘You don’t really understand what I’m saying, right? But I’m still glad you were willing to listen to me. I am tired now, so goodnight’; leaving me behind on the sofa with wide eyes…”
The next evening, Laura did not feel so well. “Makes sense..”, Gerard and Anita thought to themselves. During the movie Laura watched, many people were coughing. So she probably will have cought the flu. Tired and with a body temperature of 38.1 Celsius Laura went to bed early. That would likely help her recover. But the next morning her fever and fatigue remained. In addition, Laura had occasionally started feeling dizzy. Anita decided that her daughter needed proper rest and kept her home from college.
Gerard: “In that moment all you think is: ‘She’s feeling tired and a bit faint. It just isn’t her best day…’” Tuesday morning Laura was feeling dizzy again, so much so that our GP came over to our house. Except for low blood pressure and a slight increase in her heart rate, nothing out of the ordinary appeared to be the case.”
But, Tuesday evening it became clear that perhaps more was going on.
Anita: “In the afternoon there was talk about returning to school on Thursday. In the evening she was still in a cheerful mood, together with Melissa. All of this seemed to indicated things were improving. But when she went to bed, she fainted; a loud bang landed her under the sink. She was even shaking. With a lot of effort we managed to get her into bed after that. Her body temperature had risen to over 39 degrees. So we decided to visit the doctor the next day.
Messages on her phone
Gerard: “Later on we read What’s App messages on her phone in which she exchanged with her boyfriend what had been going on at the time. She told him she had fainted in the bathroom and that she would visit the doctor again the next day. It was clear that her boyfriend had been very worried about her.
She appeared rather concerned about her lip, which she had inadvertently bitten while falling down when she had fainted. “Well, whatever…” she wrote to him, “I don’t know; I should go to sleep now.” The way she communicated was normal, like a proper teenager. It didn’t display any fear for being panicked or feeling very ill.”
The panic arose on that Wednesday morning, when Laura visited the GP. Anita: “The GP is just at the end of our street, but she had no strength left to walk over to his office. Once she had arrived, and after a thorough examination, she slipped out of consciousness while sitting next to Gerard. That’s when the panic hit her. Our GP was still considering a flu, even though she exhibited low blood pressure and she was throwing up as well. For Laura’s peace of mind, he decided to perform a blood test. But he asserted that with some resting and good nutrition things should get better again.” Laura had stopped eating since Tuesday.
Anita: “After Laura died, of course we went over all these factors in talking to our GP. He told me: “What set my judgement off was the moment Laura shuffled into the exam room with a big smile on her face. At that moment, perhaps two hundred diagnoses may have been applicable to her situation, only one of which would have potentially been fatal. But because of her cheerful smile I simply did not consider the fatal option.” When Laura did die our GP felt shattered. Nonetheless, he helped and supported us well, both then and in the aftermath. Our connection with him actually strengthened as a result.”
Because Laura was feeling so weak, the blood sampling would be performed at our home the next morning. That moment never arrived however. Anita: “That Wednesday night she felt sick again in the bathroom. Gerard – just having come home from playing Zwarte Piet – and I, saw her suddenly slide off of the toilet. She was breathing rapidly and so we thought; she’s probably hyperventilating for of fainting again.’ So we tried to help her to breathe properly. ‘Just hold your breath slightly and then exhale…’. Can you imagine… knowing much later that your child couldn’t get in any air at all… She was trying so hard!”
Anita: “Gerard was intensely talking to Laura, trying to help, when I suddenly saw a patchy pattern appear on her legs. We asked each other: “Do you see it too..?” We decided to immediately call the GP’s emergency phone number. Then Gerard helped her to go up the stairs to her room. “I can’t! I can’t!” she cried.
Now Laura could shout more often that she couldn’t do something, so we just stimulate her and say: “you can do it Laura.”
Daddy, I can’t feel my arms anymore
Anita: “At some point we finally managed to get her up the stairs. We had to calm her down while she lay on her bed. Breathing shallow and rapidly she answered her father. Gerard had asked if she felt any pain, but she didn’t feel pain. Suddenly she said: “Daddy, my legs are tingling…” Gerard answered: ‘there are patchy spots on your legs, so that would make sense…’. ‘Papa, my arms are tingly as well.’ Then, as Laura widened her eyes, she said: ‘Daddy, I don’t feel my arms anymore’. And then suddenly … she went limp and lost consciousness. I shouted: ‘she’s not responding, she’s not responding!’ Gerard had just had a CPR refresher at work and said: ‘Anita, she has to lie on the floor.. Call 112’. Gerard then resuscitated her – still dressed as Zwarte Piet – and I called 112. Her sister, who had just come home, was very upset. I asked her to wait at the front door for the ambulance to come.”
“The ambulance arrived within ten minutes. Gerard had been performing CPR all that time. Apparently that’s a long time to apply CPR. Usually you have to switch with other people because it’s almost impossible to sustain for so long. But Gerard was in some form of primal force and just kept going on. However, through the artificial blood circulation due to the CPR, the doctors later indicated it may have sent large blood clots into her lungs. The CT scan that was made of her lungs showed many small spots, aside from the large blood lodged between her lungs.”
Birth control pill
“The paramedics took over the CPR from Gerard and meanwhile started asking all sorts of questions. Whether or not Laura had recently been in contact with birds, if she had recently travelled abroad, or if something had recently changed in her medical situation. The answers were all negative, I assumed, until suddenly I realized that she had just begun using a contraceptive pill. So I told the paramedic who then immediately began to administer blood thinners. From there on things accelerated. In no time our house was filled with people. Paramedics, trauma helicopter personnel, police officers and even firefighters at a later stage. They had been dispatched to evacuate Laura from our house through her bedroom window. Finally, she was raced over to VU Medical Center in Amsterdam. Gerard sat by her side in the ambulance. Melissa and I followed in smaller car.”
Anita: “While Laura was being resuscitated, I had no idea that my remark about the pill was so important. This only became clear to us later on, when we were told that Laura must have had a genetic deficiency; as it turned out a so called Protein-S deficiency. As a result, her blood would clot faster than normal and the risks of thrombosis were therefore higher than in other patients. The pill itself also creates increased risk of thrombosis. And so, together with the genetic deficiency, this is likely to have caused the formation of ‘large’ blood clots in her stomach artery and subsequently in her lungs as well. “
In the hospital a whole team stood by to receive Laura. Gerard: “In total there may have been as many as twenty people surrounding her. The situation was clearly grave, and we were told as much. Maybe this is why a chair was placed by Laura’s bed. This way Anita and I could hold her hand while the doctors around us were working on her.”
Gerard: “Laura was hooked up to all kinds of medical devices and the number only increased as time passed. Yet, they could not manage to stabilize her. The biggest problem was with her breathing. Her lungs would no longer function. As a result, her blood could not be oxygenated, nor her kidneys, and her liver was at risk as well. “Anita: that is the moment when you start thinking:” Maybe she won’t make it, and if she does it: what will be left of her? “I know the kind of child I have: she would never stop moving in my womb and she could never sit still for long later in life. But then you see her lying still and you think … “What future will you have?” I then said to Laura, “Lau, it’s your choice, you’re lying here, everybody is doing all they can, but it’s your choice to make. If you stay, we’ll be there for you. However it happens, it will happen, but we make sure that you’ll be able to draw again. But if you go, we’ll accept that too. It’s up to you…” I can tell this story now, but at that moment I felt completely torn apart.”
To ensure that Laura’s brain would not swell due to the lack of oxygen in her blood and to contain the damage to her other organs, her body temperature was artificially lowered. Gerard: “First it would be done for only eight hours. Later that became twenty four hours, the next morning even forty eight hours. So it was not going well. Nonetheless, there was a moment of hope. During the night she had responded to a stimulus. The decision was made to transfer her to the Erasmus Medical Center, in Rotterdam, and to connect her to a heart-lung machine.”
On Thursday afternoon Laura was taken to Rotterdam by trauma-ambulance. After a scan that was made there as extra check on the medical status of her brain, things further deteriorated. Laura had a massive haemorrhage in her lungs, due to the strong blood thinners she had been administered in an ultimate attempt to save her. Just four days after she started feeling ill she died, only 17 years old.
Just three of us
Anita: “One of the first things I thought was: ‘Melis! How will we tell Melissa?’ She absolutely didn’t want to go to the Erasmus Hospital and because we didn’t want her to be on her own, she had gone swimming at our club. How could we reach her before she would text-message us to ask how her sister was doing? We called a close friend of ours asking her to go to the pool. She would tell Melissa there that her father was going to call her.”
Melissa: “When Sonja came I didn’t realize anything yet, but shortly after that my dad called. He told me that from then on it would be just the three of us… Well, when I heard that I screamed … the entire pool heard me… “
Anita: “That’s what we felt very strongly afterwards. Suddenly it was just three of us and we had to find a new balance between us. But we had always been such a close bunch … If there was something with just one of us, the others were there. We were always there for each other, we were very close. And now, suddenly, we were missing a pawn.”
The community supported Gerard, Anita and Melissa it whatever it could. Anita: “For three weeks people would cook for us, they took care of us. But after Christmas it felt like we fell into an inevitable pit. First Melissa, then Gerard and after six months I was all spent. I had a feeling that expressed ‘this cannot have been for nothing’. Laura must not have died for nothing.”
In the meantime, four of Laura’s fellow students were looking for something to create. Laura had sketched a chair shortly before her death. How wonderful would it be if that chair could be developed. Together with a teacher from Laura’s college, they worked out the idea.
Gerard and Anita then decided to follow up on the plan by setting up a foundation, The Project Laura Foundation. With this foundation, they call attention to the risks of thrombosis associated with contraceptive pill use. They hope that the proceeds from the chair can help further that cause.
Gerard: “The risks and consequences of thrombosis must become better understood. Not only by ‘regular people’ but also by their GPs. With our foundation and support from the Thrombosis Foundation Netherlands (www.trombosestichting.nl) we hope to achieve this as well as to raise funds for further research into thrombosis in general.
Anita: “When you start the pill, you usually know that there is an ‘acceptable’ risk involved regarding thrombosis. But combined with what has shown to be a genetic predisposition to thrombosis, the risks threatening Laura had vastly increased. These risks, especially concerning your very own child, then no longer are ‘acceptable’. We want to make clear to everyone what consequences this may have. Our Laura was a girl who had only just found her place in life, and who was on her way to becoming a beautiful independent woman. The pill resulting in thrombosis ended all of it.”
Interview by Esmeralda Wybrands, Policy Officer at the Thrombosis Foundation Netherlands
(October 13, 2014 – the first World Thrombosis Day)