It is one of the worst losses a family can have, the death of a child. For one family, that tragedy was doubled when they lost two children within weeks of each other.
For Connecticut couple, Allison and Ben Gauvin, the death of their two young children has been devastating but it has also changed their lives for the better. It has taught them how to love differently.
At 38 weeks, Allison gave birth to her second child, Beckett. Immediately after birth, the doctors noticed that he was having breathing problems and he was rushed to the Neonatal Intensive Care Unit.
Within 24 hours, Beckett was diagnosed with pyruvate carboxylase deficiency, a rare mitochondrial disease.
This disease affects one in every 4,000 to 5,000 people and causes the body to produce lactic acid in the blood, leading to stomach pain, vomiting, extreme fatigue, and organ failure.
“We can detect it very soon after birth. The babies have very low muscle tone and they may have seizures right away. They may be breathing quickly,” said Dr. Amy Goldstein, the president of the Mitochondrial Medical Society. The doctor told the couple that their son would die.
But Beckett began to improve and he was released from the hospital at 10 weeks old. Then the unthinkable happened. At Allison’s post postpartum appointment with her doctor, she received some shocking news. She was pregnant again.
“That can’t be true,” she thought, but it was. Sadly, doctors suspected that this baby would also be affected by the disease.
Soon after the birth of their daughter, Clementine, she too was diagnosed with pyruvate carboxylase deficiency. The diagnosis was fatal for both children but Alison and Ben wanted to make sure that their children’s short lives would be as full as possible.
“You only get to do it once,” said Allison. “ We said ‘yes’ to everything even if it was more work.” The family had two great years with Beckett and Clementine.
Then, right before his second birthday, Beckett became sick. He was rushed to the hospital where he was put on dialysis to purify his blood. From then on, he was returned to the hospital every six to eight weeks.
Unfortunately, little Clementine would meet the same fate. With both children hospitalized, Allison and Ben’s main goal was to keep them comfortable and out of pain.
A week before Beckett’s death, he was allowed out of his wheelchair so that he could sit with the other students on the floor at school. This was something that had not been allowed due to the risk of infection.
Clementine died nine days after she was brought home from the hospital. Beckett’s death followed only eight weeks later. “They were the most sociable, lovable and if anything they were the perfect human beings because that’s all they responded to was love,” said Ben of his children.
Sharing a piece of Beckett and Clementine’s lives has changed the Gauvin family for the better. For Alison and Ben, it has put a different perspective on how to raise their two remaining children. “We love Julia and Wilbur differently than we would if we didn’t have Beckett and Clementine,” said Allison.
Though the loss is difficult, the couple knows that Beckett and Clementine were a true blessing. “I don’t think Beckett and Clementine had any less of a life,” said Allison. They share a positive outlook on their experiences with Beckett and Clementine, remembering how wonderful their two children were.
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