Mom delivers baby, dad sees him and turns pale –
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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. 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 baby’s face. 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 was devastated. 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 doctor’s advice and reach out to people who were in a similar situation. This is how Andrea described her feelings on the “Love What Matters” Facebook page.

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 they 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, sitting on the bed with three open boxes of pregnancy tests.

They decided to wait a few months before telling others, at least until the end of the first trimester. They didn’t want to go through the same thing again. They wanted to keep it between them. “He’s our little boy, Ben. God has given us another chance. That’s the way we’ll do it,” Andrea said, relieved.

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 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. However, before Andrea could take off her hospital gown, the doctor appeared with a folder in his hands. 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 their baby.

They needed answers. Andrea pleaded with Ben to find out what was happening with their son. Meanwhile, Andrea was left all alone in the delivery room. No one would tell her anything. She 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 Cutes 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 handling little Adam’s case told them sadly.

Andrea and her husband were devastated, but they were determined to take care of Adam and 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 worked 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 participate in sports, although his illness weakens his leg. He knows his limits well and understands 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 live his life.

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, under-researched, and untreated diseases. They are an example of how the support of family and organizations created around these types of diseases can help overcome difficulties and allow people like Adam to feel free and able to live a normal life.

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