Mom delivers baby, dad sees him and turns pale
Andrea West met her future husband during her senior year. She and Ben struck up a whirlwind romance and bought a house in Andrea’s hometown in Virginia shortly after graduating. They had an idyllic love story right out of a romantic movie; everything was perfect between them. They were in love and both were very clear about what they wanted in life: to get married and start a big family. Andrea had always wanted to have many children; that’s why it was so important for her to get married young and start creating her new family project.
Two years after moving in together, the long-awaited engagement came, and a few months later, the wedding—an intimate ceremony with only 50 guests in which they were accompanied by their friends and family. They went on their honeymoon to Mallorca and, just a couple of months later, the moment they had been waiting for arrived: Andrea was pregnant with their first child. The pregnancy came so fast that they barely had time to prepare, but that did not bother them. Any time, Andrea and her husband were happy and began to prepare for parenthood as any other couple their age would.
She was a very active person on social networks and was part of several groups where she shared the most important things that happened to her and that she needed to share with the rest of the world. The news of her pregnancy did not take long to go viral among her followers. “We are so happy to announce that we are expecting our first child. We can’t wait to see our little face. Baby, mom and dad are waiting for you,” Andrea wrote moments after seeing her doctor to confirm she was pregnant.
The pregnancy went normally for the first few weeks and everything seemed to indicate that it was going to be a normal pregnancy. Andrea was feeling fine and only had the usual first trimester discomforts. However, after 11 weeks, all that happiness turned to pain. One Sunday afternoon while enjoying a family meal, Andrea suffered a miscarriage. Since the fetus had barely developed, she did not require any further medical attention, and the doctors only recommended rest and psychological care.
“Andrea, we are sorry to inform you that you have suffered a miscarriage. It will be a painless process physically, and your body will expel the fetus naturally. We only recommend rest and that you try to talk to other women who have gone through this. The reality is that suffering this type of miscarriage during the first three months of pregnancy is more common than we think; it is the most delicate phase and is not always overcome. Talk to someone who feels the way you feel now; that will help you heal and understand what has happened to you,” those were the words of the gynecologist who attended her during her miscarriage.
For Andrea, to hear the doctor say that was eye-opening. She felt lost, plunged in sadness, and didn’t understand why this had happened to her. She needed understanding from other women and decided to take her advice and reach out to people who were in a similar situation to her. This is how Andrea described the feeling on the “Love What Matters” Facebook page: “I was devastated. I didn’t know what to do, who to talk to, what was appropriate to discuss, or who could help me. I didn’t know that one in four women suffer from the same thing and that people don’t talk about it. I didn’t know if I could ever face pregnancy again.”
Reaching out to women who felt the same pain was the best way to recover from the miscarriage and the loss of her baby. Andrea and her husband were devastated afterward, but their love didn’t suffer, and they knew they would try again when they felt ready. After a while, Andrea’s anxiety subsided with the help of her supportive husband and people she had met through social media. After a year of therapy and a lot of self-care, they decided to try again and were very fortunate to succeed quickly.
“We’re pregnant again, my love! Look, I’ve taken three different pregnancy tests and they all came back positive. It can’t be a mistake,” Andrea told her husband one morning. She was sitting on the bed, and next to her were three open boxes of pregnancy tests. “You don’t know how happy you make me, darling. This time everything will be different, you’ll see. We will take care of every detail; we will take care of you and this baby in the best way possible,” he said, hugging her with tears in his eyes.
“I would like to wait a few months to tell the others. I don’t know, at least until the end of the first trimester. I don’t want to go through the same thing again. I want it to stay between us. He’s our little boy, Ben. God has given him another chance.”
“That’s the way we’ll do it, Andrea. Don’t worry, we’ll wait as long as it takes. I love you,” Ben said to his wife. He knew how much she had suffered with the first miscarriage, so now everything would go much slower and at the pace his wife said.
Andrea promised herself that she would do everything in her power to help her baby grow up healthy. She gave up a number of foods such as cold cuts, sushi, and some cheeses. She also started devouring pregnancy books. She was convinced that this pregnancy would go well and that she and the baby would stay strong until the last day. And so it was. Andrea’s efforts paid off, and the pregnancy went smoothly. The baby had grown strong and healthy, and at every ultrasound, they had received good news from the doctors. “Your baby is strong and growing fast. There is no problem,” her doctor told her every time she asked him, worried about the evolution of the fetus.
Andrea and Ben decided not to wait to find out the sex of the baby; they wanted to have everything ready. The ultrasound revealed that they would be parents of a boy whom they finally decided to name Adam. The last trimester of the pregnancy went normally, and Andrea started having small contractions just when the doctors had assumed. Ben rushed her to the hospital and there they were admitted to the delivery room, where after several tests, she was told that it was a false alarm and that they were still a few days away.
However, before Andrea could take off her hospital gown, the doctor appeared with a folder in his hand. Something was wrong; Andrea sensed it. “The last ultrasound showed that there was hardly any amniotic fluid left. We must induce labor immediately. If we don’t get it out now, the fetus will die,” were the words the doctor said with a look of real concern on his face.
Andrea began to feel nauseous and panic set in. Luckily, Ben was there with her to calm her down and tell her that the doctors knew what they were doing and would save her baby. “Andrea, we need you to calm down now for your sake and for the baby’s sake. You’re in the best hands. We will take care of you and your child,” the doctor who had to deliver her baby told her.
Andrea closed her eyes and decided to trust. She wanted to see her baby’s face; it was what she was looking forward to most and what she had been waiting for months, so she decided to have faith and let the doctors do their job. Luckily, there were no further complications, and before the night was over, Andrea and her husband welcomed their first child, Adam, into the world.
But something went awry because, instead of handing them their son, the doctors took Adam in the middle of a confusing tangle of medical staff. They were all talking very fast and saying things that neither Andrea nor Ben could understand. “Ben, please do something! Tell me what’s going on with our son!” Andrea shouted to him from the stretcher with hardly any strength left.
Ben approached the crowd of doctors surrounding his baby and caught a glimpse of his son over the shoulder of one of them. What he saw made his blood run cold, and he didn’t even want to look again; he didn’t want to believe it. He turned to Andrea and uttered the worst words you can say to a mother who has just given birth: “Honey, I don’t know what’s wrong, but I’ve seen it and there’s something wrong with Adam’s leg.”
Twenty people had gathered around little Adam. The more time passed without answers, the more worried Andrea and her husband became. “What’s wrong with our son? Go and find out, please! I can’t move. I need answers, please. My love, go and find out the truth,” Andrea begged him in tears of despair.
Ben and his mother, who had come to the hospital along with the rest of the family when they heard that Andrea had gone into labor, left to inform the family members outside. Meanwhile, Andrea was left all alone in the delivery room. No one would tell her anything; she heard nothing and felt like her world was falling apart again. In the loneliness of that cold hospital room, she just needed to see her baby and know that he was okay. She asked for nothing more.
A few hours later, the first diagnosis came. The doctors were not optimistic and still had many tests to run, but it became increasingly clear to them that Adam would never be a normal child. When Adam was born, the right side of his stomach and his entire right leg were marbled in purple and black, which quickly alarmed the doctors and set in motion the entire testing apparatus to rule out any other illnesses.
The final diagnosis, after endless hours of testing and waiting, was Cutis Marmorata Telangiectatica Congenita (CMTC), an extremely rare vascular malformation. Andrea and her husband didn’t know how to react. At the time of their son’s birth, only 500 cases of the disease had been reported in the world. It was one of the rarest diseases in the world and, of course, one of the least researched.
“Treatment options were scarce. We regret having to tell you that the disease your son is currently suffering from has no cure. We can only give you some precise instructions to protect his skin from the sun and from possible external agents that could damage it, but there’s nothing that will eliminate the problem,” the doctor who was handling little Adam’s case told them sadly.
“But my son will be able to be a normal child, won’t he? Will he be able to play, laugh, go to school? Will he be able to do all that?” Andrea asked, very anguished at the lack of answers.
“As a doctor, right now, I can only tell you that we should be hopeful and thankful for your son’s good response to the tests and treatments he’s receiving. I can’t assure you that everything will be the same in a year, much less in five years. It is a complex disease and has many complications that we will have to monitor as Adam gets older. I’m sorry.”
“I understand what you’re telling me, doctor. Don’t worry, we will be by our son’s side and take care of him always, and if there’s any possibility to improve his health condition and quality of life, we will not hesitate to seek help.”
In the end, Adam was able to go home with a strict set of instructions on how to care for his skin. Andrea and her husband were determined to take care of Adam and to do everything they could to ensure that his condition did not worsen or become an obstacle in his life. Throughout his life, especially during his first year, Adam underwent a multitude of tests on his vital organs, which fortunately he passed without any problems.
His body grew strong despite the disease, and that gave his parents hope to keep fighting for him and other children who were in the same situation as their son. Andrea and her husband became great supporters of associations fighting for increased spending on rare disease research and of the CMTC Alliance, a global non-profit organization that helps people diagnosed with rare vascular malformations. Both work passionately to raise awareness of these diseases and advocate for those affected.
The tireless struggle of their parents and many other families has made it possible for children like Adam to live happily and without fear. Their work is to accompany them and introduce them to a society that rejects them for being different. Andrea wanted her son to be a normal and happy child, and she achieved this through effort, love, and solidarity.
Adam is now a happy and healthy child who loves mathematics and playing chess. He has even been able to play sports; although his illness weakens his leg, he knows his limits well and knows the complexities of his illness, but the unconditional support of his family and friends gives him the strength he needs to get up every morning and get on with his life.
Written by Andrea West on Facebook on Saturday, March 5th, 2022, despite everything and even though Adam knows he’s slightly different from other children, he’s never seen his disability as an obstacle. Adam may have had a rough start in life, but today the West family is happy. The story of Andrea and her son is the story of many other families affected by rare, researched, untreated diseases. They’re an example of how the support of the family and the entities created around these types of diseases are able to overcome difficulties and allow people like Adam to feel free and able to live a normal life.
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