Parents Find Hope and Purpose, In Spite of Being Given None
Members of the medical community still say Holoprosencephaly is incompatible with life, but our stories say otherwise.
Michelle Modula Duffo and her husband Jose had tried to get pregnant for seven years, before turning to IVF. Michelle and Jose were thrilled with the success of the process and looked forward to welcoming their child.
“At 18 weeks, my OB/GYN did a scan and saw the extra fluid,” Michelle said. As a result of that scan, the doctor sent Michelle to a maternal fetal medicine physician who, two weeks later, gave her the prenatal diagnosis of HPE. “That doctor was completely negative,” Michelle said. “He told me that my baby wouldn’t survive the pregnancy and, if he did, he wouldn’t live for very long after birth. Every week, the doctor told me to terminate the pregnancy because it was incompatible with life.”
When Michelle received the diagnosis, she immediately googled holoprosencephaly and found Families for HoPE. She then looked for holoprosencephaly on Face Book and found the Holoprosencephaly and Families for HoPE group. She began to learn about HPE, see the children with HPE and interact with the families touched by HPE. “I know God makes no mistakes and God is in control,” she said. Her faith and the HPE community she discovered strengthened her and gave her hope.
Michelle’s blood pressure was “through the roof”, she was hospitalized with preeclampsia and her son, Elijah, was born at 35 weeks. Because of the difficulties with the birth, Michelle didn’t get to see Elijah until he was three-days old but, she was reassured by being told of his loud, healthy cries upon entering the world.
Of first seeing her son, Michelle says that the experience was surreal. “It was real and surreal at the same time,” she said. “I had no expectations but, he was alive and breathing. My husband and I were happy but, holding our breaths.”
Elijah spent 27 days in the NICU. Following surgery to receive a shunt to address his hydrocephalus, Elijah was ready to go home. “He came through the surgery well and he was doing very well,” Michelle recalls.
She remembers being told that she’d be trained and supported to care for her son before discharge from the hospital but, that preparation never came. “I thought I wasn’t prepared,” she said. “The nursery wasn’t completely ready and I wasn’t mentally prepared.” For the first two months at home Elijah’s vitals were constantly monitored. “It was so loud and it went off whenever he cried.” Jose and Michelle quickly learned that their baby’s heart rate would trigger the alarm when he was crying out of hunger or other normal, routine discomfort all baby’s experience and that he was otherwise doing fine. Elijah was eating by mouth. “He was a typical, tiny baby except for his big head,” Michelle said. “We just followed his lead.” After test and exams, the monitor came off.
At seven-months old, Elijah had what doctors told Michelle was a “possible” seizure. Though Elijah’s EEG’s have all been normal, he has been on seizure medication since then.
Elijah is now 16 months old. “He’s getting stronger by the day,” Michelle said. “He’s such a happy child. I have no words for this blessing. It’s changed us tremendously.” Michelle and Jose both embrace their son being different. “It’s been such a happy year for us,” she said. “We just want him to be happy and healthy. Some people tell me they pray for him to be healthy but he’s healthy as he is. I struggle to find a graceful way to tell them don’t ask God to change him.”
Michelle says that Elijah has given her a purpose bigger than imagined – supporting and helping other families who haven’t been given hope. “The biggest thing to remember is to realize you have no control,” Michelle said. “Don’t ask why or how you’ll make it. No one has the answers. Friends may not understand what you’re going through. Don’t be afraid to reach out.” Michelle said that seeing all the families in the Families for HoPE Face Book group gives her hope each day. “I’m very grateful to see other children who are doing fine. Seeing the changes and impact Elijah has had on her and others is great, Michelle said.
The Duffo family’s story is one of so many examples of why this week, HPE Awareness Week, is so important. Everything we all do to educate the medical community and our wider communities about HPE will go a long way in making sure families find hope and support.
Please consider a donation to Families for HoPE today to help reach these awareness goals.
Share the HoPE in Holoprosecephaly
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Celebrating HPE Awareness Week, Sharing Our Families’ Stories
Posted: March 25, 2024 by lyndot71
Parents Find Hope and Purpose, In Spite of Being Given None
Members of the medical community still say Holoprosencephaly is incompatible with life, but our stories say otherwise.
“At 18 weeks, my OB/GYN did a scan and saw the extra fluid,” Michelle said. As a result of that scan, the doctor sent Michelle to a maternal fetal medicine physician who, two weeks later, gave her the prenatal diagnosis of HPE. “That doctor was completely negative,” Michelle said. “He told me that my baby wouldn’t survive the pregnancy and, if he did, he wouldn’t live for very long after birth. Every week, the doctor told me to terminate the pregnancy because it was incompatible with life.”
When Michelle received the diagnosis, she immediately googled holoprosencephaly and found Families for HoPE. She then looked for holoprosencephaly on Face Book and found the Holoprosencephaly and Families for HoPE group. She began to learn about HPE, see the children with HPE and interact with the families touched by HPE. “I know God makes no mistakes and God is in control,” she said. Her faith and the HPE community she discovered strengthened her and gave her hope.
Michelle’s blood pressure was “through the roof”, she was hospitalized with preeclampsia and her son, Elijah, was born at 35 weeks. Because of the difficulties with the birth, Michelle didn’t get to see Elijah until he was three-days old but, she was reassured by being told of his loud, healthy cries upon entering the world.
Of first seeing her son, Michelle says that the experience was surreal. “It was real and surreal at the same time,” she said. “I had no expectations but, he was alive and breathing. My husband and I were happy but, holding our breaths.”
Elijah spent 27 days in the NICU. Following surgery to receive a shunt to address his hydrocephalus, Elijah was ready to go home. “He came through the surgery well and he was doing very well,” Michelle recalls.
She remembers being told that she’d be trained and supported to care for her son before discharge from the hospital but, that preparation never came. “I thought I wasn’t prepared,” she said. “The nursery wasn’t completely ready and I wasn’t mentally prepared.” For the first two months at home Elijah’s vitals were constantly monitored. “It was so loud and it went off whenever he cried.” Jose and Michelle quickly learned that their baby’s heart rate would trigger the alarm when he was crying out of hunger or other normal, routine discomfort all baby’s experience and that he was otherwise doing fine. Elijah was eating by mouth. “He was a typical, tiny baby except for his big head,” Michelle said. “We just followed his lead.” After test and exams, the monitor came off.
At seven-months old, Elijah had what doctors told Michelle was a “possible” seizure. Though Elijah’s EEG’s have all been normal, he has been on seizure medication since then.
Elijah is now 16 months old. “He’s getting stronger by the day,” Michelle said. “He’s such a happy child. I have no words for this blessing. It’s changed us tremendously.” Michelle and Jose both embrace their son being different. “It’s been such a happy year for us,” she said. “We just want him to be happy and healthy. Some people tell me they pray for him to be healthy but he’s healthy as he is. I struggle to find a graceful way to tell them don’t ask God to change him.”
Michelle says that Elijah has given her a purpose bigger than imagined – supporting and helping other families who haven’t been given hope. “The biggest thing to remember is to realize you have no control,” Michelle said. “Don’t ask why or how you’ll make it. No one has the answers. Friends may not understand what you’re going through. Don’t be afraid to reach out.” Michelle said that seeing all the families in the Families for HoPE Face Book group gives her hope each day. “I’m very grateful to see other children who are doing fine. Seeing the changes and impact Elijah has had on her and others is great, Michelle said.
The Duffo family’s story is one of so many examples of why this week, HPE Awareness Week, is so important. Everything we all do to educate the medical community and our wider communities about HPE will go a long way in making sure families find hope and support.
Please consider a donation to Families for HoPE today to help reach these awareness goals.
Share the HoPE in Holoprosecephaly
Like this:
Category: Child of HoPE, Holoprosencephaly Awareness Week, Inspiration, Perspectives, Prenatal Diagnosis Tags: holoprosencephaly, HoPE, hpe awareness week, prenatal diagnosis, stories