A Mother Draws Strength from Faith: “I want to give families hope I have.”
Danielle Monson calls her two-and-a-half-year-old daughter Raelea a miracle. Raelea was born, after Danielle and her husband Zachary had tried to have a baby for thirteen years. They had given up trying and adopted three children by the time Raelea was conceived. The couple was overjoyed at learning their first biological child would soon enter the family.
Because Danielle was over the age of thirty-five, she sought the care of doctors who specialized in high-risk pregnancies. Everything with her pregnancy was moving along smoothly. Shock, confusion and fear came at 16 weeks, when Danielle first heard the word holoprosencephaly (HPE). A rollercoaster ride of uncertainty and anxiety began.
“We were given the diagnosis of holoprosencephaly by my doctor,” Danielle said. “He was very suggestive of terminating the pregnancy from the start and gave us no hope. I told him termination wasn’t an option I would consider.”
It was then that Danielle began a search for information on holoprosencephaly that ultimately led her to Families for HoPE, Inc. and the Families for Hope and Holoprosencephaly Face Book group. “I didn’t join the group right away,” Danielle recalled. “I was too scared and overwhelmed.”
She and Zachary consulted another high-risk pregnancy doctor at 20 weeks and, after a fetal MRI was done, the couple was told that there was no evidence of holoprosencephaly. Except for slightly larger than normal ventricles, the large open structures of the brain filled with cerebrospinal fluid, nothing appeared concerning. It wasn’t until a maternal-fetal medicine specialist completed a fetal MRI at 22 weeks that a diagnosis of semi lobar holoprosencephaly was made. Finally, after another scan at 26 weeks, a diagnosis of the more severe alobar holoprosencephaly was given the couple. Danielle remembers being shown pictures of children diagnosed with alobar HPE, even though the doctor told her the fetal scan had shown none of the midline deformities of eyes, nose, or mouth typically present with the alobar type of HPE. “She is different,” Danielle said the doctor told her. “He said, ‘You’ll just have to watch and see what she can do.’”
Raelae was born at 33 weeks, breathing on her own and strong, despite a cyst that pushed her brain to the front portion of her skull. She was successfully operated on at 4-days-old and remained in the NICU for 5 weeks. Coming home as a newborn, she never had any issues with breathing, aspiration or seizures that are most common with holoprosencephaly. “She’s very sweet, she’s got that first child energy,” Danielle said. “You get that she can never do anything wrong. She’s just a sweet soul.” Danielle notes that her daughter is shy with those outside of her family. “She adores her siblings, and they delight in her. She doesn’t smile at everyone but, if she smiles at you, you’re one of her people. She’s an empath and can pick up on the energy of others. She goes for calming energies.”
For Danielle, as a parent of a child diagnosed with HPE, the most important thing she has learned was the most difficult thing she had to learn. “I had to learn to accept that you’re not in control,” she said. “Accepting you’re not in control is hard but, when I was able to accept that, I was able to find peace.” She added that her faith gives her hope and she leans on her faith. “God is who gave us the strength through the pregnancy. We had to lean on Him and not our own understanding,” she said. “When I first got the diagnosis of HPE, I could only think of the things I would never do. I would never see my child walk down a wedding aisle, I would never see her have children and be a grandma to them,” she recalls. “Then I realized that those things in life are never guaranteed any of us. No one is guaranteed another day of life”
“I want to give other families hope I have, “Danielle said. “I don’t know if Raelea will ever walk but, I let her do whatever she can. I put no limitations on her.” Raelea’s presence has given her siblings their abilities of understanding, acceptance, and kindness toward others. Her presence in her family’s life fills their days with hope, peace and love.
Share the HoPE in Holoprosecephaly
Like this:
Like Loading...
Celebrating HPE Awareness Week, Sharing Our Families’ Stories
Posted: March 29, 2024 by lyndot71
A Mother Draws Strength from Faith: “I want to give families hope I have.”
Danielle Monson calls her two-and-a-half-year-old daughter Raelea a miracle. Raelea was born, after Danielle and her husband Zachary had tried to have a baby for thirteen years. They had given up trying and adopted three children by the time Raelea was conceived. The couple was overjoyed at learning their first biological child would soon enter the family.
Because Danielle was over the age of thirty-five, she sought the care of doctors who specialized in high-risk pregnancies. Everything with her pregnancy was moving along smoothly. Shock, confusion and fear came at 16 weeks, when Danielle first heard the word holoprosencephaly (HPE). A rollercoaster ride of uncertainty and anxiety began.
“We were given the diagnosis of holoprosencephaly by my doctor,” Danielle said. “He was very suggestive of terminating the pregnancy from the start and gave us no hope. I told him termination wasn’t an option I would consider.”
It was then that Danielle began a search for information on holoprosencephaly that ultimately led her to Families for HoPE, Inc. and the Families for Hope and Holoprosencephaly Face Book group. “I didn’t join the group right away,” Danielle recalled. “I was too scared and overwhelmed.”
She and Zachary consulted another high-risk pregnancy doctor at 20 weeks and, after a fetal MRI was done, the couple was told that there was no evidence of holoprosencephaly. Except for slightly larger than normal ventricles, the large open structures of the brain filled with cerebrospinal fluid, nothing appeared concerning. It wasn’t until a maternal-fetal medicine specialist completed a fetal MRI at 22 weeks that a diagnosis of semi lobar holoprosencephaly was made. Finally, after another scan at 26 weeks, a diagnosis of the more severe alobar holoprosencephaly was given the couple. Danielle remembers being shown pictures of children diagnosed with alobar HPE, even though the doctor told her the fetal scan had shown none of the midline deformities of eyes, nose, or mouth typically present with the alobar type of HPE. “She is different,” Danielle said the doctor told her. “He said, ‘You’ll just have to watch and see what she can do.’”
Raelae was born at 33 weeks, breathing on her own and strong, despite a cyst that pushed her brain to the front portion of her skull. She was successfully operated on at 4-days-old and remained in the NICU for 5 weeks. Coming home as a newborn, she never had any issues with breathing, aspiration or seizures that are most common with holoprosencephaly. “She’s very sweet, she’s got that first child energy,” Danielle said. “You get that she can never do anything wrong. She’s just a sweet soul.” Danielle notes that her daughter is shy with those outside of her family. “She adores her siblings, and they delight in her. She doesn’t smile at everyone but, if she smiles at you, you’re one of her people. She’s an empath and can pick up on the energy of others. She goes for calming energies.”
For Danielle, as a parent of a child diagnosed with HPE, the most important thing she has learned was the most difficult thing she had to learn. “I had to learn to accept that you’re not in control,” she said. “Accepting you’re not in control is hard but, when I was able to accept that, I was able to find peace.” She added that her faith gives her hope and she leans on her faith. “God is who gave us the strength through the pregnancy. We had to lean on Him and not our own understanding,” she said. “When I first got the diagnosis of HPE, I could only think of the things I would never do. I would never see my child walk down a wedding aisle, I would never see her have children and be a grandma to them,” she recalls. “Then I realized that those things in life are never guaranteed any of us. No one is guaranteed another day of life”
“I want to give other families hope I have, “Danielle said. “I don’t know if Raelea will ever walk but, I let her do whatever she can. I put no limitations on her.” Raelea’s presence has given her siblings their abilities of understanding, acceptance, and kindness toward others. Her presence in her family’s life fills their days with hope, peace and love.
Share the HoPE in Holoprosecephaly
Like this:
Category: General