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On May 29, 2020, my husband Mark and I, Brenda, were greeted with an amazing blessing: a positive pregnancy test. We were expecting our second child! Our only son, Marky, was very excited to learn the news that he would become a big brother! We learned of this news during a time where Covid -19 was in every media outlet and the world seemed to be in a panic, but it was a time of joy and delight for our family!
My pregnancy was pretty similar to most. I had morning sickness, food aversions, and tons of crazy hormones. Being a diabetic, I was considered a high-risk pregnant mother, and so I took extra precautions and worked hard at maintaining healthy levels throughout my body.
Later in my pregnancy, I went to receive an ultrasound and there were some abnormalities found in the sonograms. We were given the news that our daughter would have a cleft lip and possibly a cleft palate and that her brain was developing abnormally. After meeting with both specialists in Midland and Lubbock, we learned that our daughter was diagnosed with a rare disorder called Holoprosencephaly.
Upon hearing this news, Mark and I were shocked, scared, worried, but mostly hopeful. We were saddened to hear that in this situation, many parents seek options such as aborting their baby or even adoption. For us and our beliefs, we spared the conversation because abortion was not an option that we would ever consider. Instead, we knew automatically that God had blessed us with a child who would have special needs and would need a special kind of love. We knew right away in our hearts that our baby would teach us to lead a different life and would have a long journey ahead of her with a special will God has for her.
On January 5, 2021, at 11:37 am, we greeted our premature baby girl. She weighed 3lbs 8oz and measured 16 3/4 inches long. She was immediately sent to the neonatal intensive care unit and continues to grow there. God’s grace is enough, and always will be.
Holoprosencephaly is a condition in which the forebrain does not develop normally. In a normal human brain, the brain ideally separates between the left and right halves of the forebrain, but in the case of Holoprosencephaly, both sides do not separate. There are several types of Holoprosencephaly with many different symptoms that are different for each case. Although a diabetic mother can increase the likeliness of Holoprosencephaly, there is not a known cause as to why children are born with the condition.
Children who are diagnosed with this disorder will experience different abnormalities. As we learn more about Holoprosencephaly, we learn more about our baby Adalyn and how to care for her. In her case, doctors have been phenomenal and are seeking answers left and right as to what needs she may have. Instead of focusing on the “what if’s,” we have decided to focus on what she needs now and what care she needs. We are taking it one day at a time.
During her first week of birth, she underwent surgery to fix a blockage in her intestine. She has experienced seizure activity, which is common with holoprosencephaly and has received medicine to help control it. She has a cleft lip, but her palate is still intact. She has received a blood transfusion, EEG, and MRI studies, and has endured much lab work. She is receiving breast milk and has been handling it well based on her healing from the surgery. We are awaiting many more answers, asking many questions, and there are many tests to be done on this long road we are on. We may never know why Adalyn was born with this condition, but we will always cherish why she is in our lives. Ultimately, our sweet Adalyn Grace was given to us to glorify God and to show us His love in a different, special way. She is a fighter and a strong baby girl filled with much hope. God is her Great Physician and His best medicine is love. He has an amazing team of doctors working day and night as His instruments on baby Adalyn, and for all His beautiful children in the world with illnesses. We are blessed that science can go very far, but ultimately God has the final word. Adalyn Grace is our hope. Mark, Marky, and I pray for her daily and invite you to keep her and all children and families with loved ones diagnosed with holoprosencephaly. Thank you for sharing your love and support in many ways, and for all your prayers and petitions.
My pregnancy was pretty similar to most. I had morning sickness, food aversions, and tons of crazy hormones. Being a diabetic, I was considered a high-risk pregnant mother, and so I took extra precautions and worked hard at maintaining healthy levels throughout my body.
Later in my pregnancy, I went to receive an ultrasound and there were some abnormalities found in the sonograms. We were given the news that our daughter would have a cleft lip and possibly a cleft palate and that her brain was developing abnormally. After meeting with both specialists in Midland and Lubbock, we learned that our daughter was diagnosed with a rare disorder called Holoprosencephaly.
Upon hearing this news, Mark and I were shocked, scared, worried, but mostly hopeful. We were saddened to hear that in this situation, many parents seek options such as aborting their baby or even adoption. For us and our beliefs, we spared the conversation because abortion was not an option that we would ever consider. Instead, we knew automatically that God had blessed us with a child who would have special needs and would need a special kind of love. We knew right away in our hearts that our baby would teach us to lead a different life and would have a long journey ahead of her with a special will God has for her.
On January 5, 2021, at 11:37 am, we greeted our premature baby girl. She weighed 3lbs 8oz and measured 16 3/4 inches long. She was immediately sent to the neonatal intensive care unit and continues to grow there. God’s grace is enough, and always will be.
Holoprosencephaly is a condition in which the forebrain does not develop normally. In a normal human brain, the brain ideally separates between the left and right halves of the forebrain, but in the case of Holoprosencephaly, both sides do not separate. There are several types of Holoprosencephaly with many different symptoms that are different for each case. Although a diabetic mother can increase the likeliness of Holoprosencephaly, there is not a known cause as to why children are born with the condition.
Children who are diagnosed with this disorder will experience different abnormalities. As we learn more about Holoprosencephaly, we learn more about our baby Adalyn and how to care for her. In her case, doctors have been phenomenal and are seeking answers left and right as to what needs she may have. Instead of focusing on the “what if’s,” we have decided to focus on what she needs now and what care she needs. We are taking it one day at a time.
During her first week of birth, she underwent surgery to fix a blockage in her intestine. She has experienced seizure activity, which is common with holoprosencephaly and has received medicine to help control it. She has a cleft lip, but her palate is still intact. She has received a blood transfusion, EEG, and MRI studies, and has endured much lab work. She is receiving breast milk and has been handling it well based on her healing from the surgery. We are awaiting many more answers, asking many questions, and there are many tests to be done on this long road we are on. We may never know why Adalyn was born with this condition, but we will always cherish why she is in our lives. Ultimately, our sweet Adalyn Grace was given to us to glorify God and to show us His love in a different, special way. She is a fighter and a strong baby girl filled with much hope. God is her Great Physician and His best medicine is love. He has an amazing team of doctors working day and night as His instruments on baby Adalyn, and for all His beautiful children in the world with illnesses. We are blessed that science can go very far, but ultimately God has the final word. Adalyn Grace is our hope. Mark, Marky, and I pray for her daily and invite you to keep her and all children and families with loved ones diagnosed with holoprosencephaly. Thank you for sharing your love and support in many ways, and for all your prayers and petitions.