Alobar Holoprosencephaly's guest appearances

Alobar Holoprosencephaly

Inspiring life despite a diagnosis

Hydrops Fetalis

Amy Jandrisevits

Cockayne Syndrome

Harlequin Ichthyosis

Cornelia de Lange

OwlTail

Sydney and Darren courageously chose life despite being told that their daughter had a fatal condition.  Grace was diagnosed with alobar holoprosencephaly.  She lived for five and a half hours and greatly impacted those around her. Finding Beauty in Your Baby's DeathYour baby is going to dieWhen they had their 20-week ultrasound Darren and Sydney received news that no parent wants to hear.  The ultrasound tech said to them, “There’s something that’s a little different, but I don’t know what it is.  I’m going to have the doctor look at something, so we’ll be back.”  After the doctor came in, he confirmed the sonographer’s suspicion.  He wasn’t sure exactly what was going on and referred them to see a specialist.  Luckily, the specialist was able to see them the same day. They were told that their baby didn’t have any separation between the two hemispheres of her brain. Grace has alobar holoprosencephaly, a fatal condition.Subtly bringing up abortionAfter receiving their diagnosis, the doctor talked with Darren and Sydney about their options.  They recalled him talking about their ‘options’ even though the only option he really talked about was abortion.Darren recalled him talking very, very fast talking about what Grace had.  Finally it occurred to Sydney and Darren that they only had two options abortion or carrying to term.  “He presented the abortion option, and it was subtle and kind of..smooth. However, the other option was the one that we chose.” said Darren.Only wanting the chance to see her and hold her Sydney asked, “What’s the likelihood that she’ll make it to birth?”  Her doctor replied, “You know the probability is high.” even though he brought up abortion first. This made both Darren and Sydney feel like he wanted them to chose abortion.“She made it!”At 37 weeks Sydney was induced to prevent the need for a C-section.  “We went in for the inducement, and labor went pretty smoothly. Towards the end, the baby’s heart kept dipping, and that was really stressful to me because I just wanted her, I just wanted to hold her.”Finally, Grace was born and let out a tiny little cry.  “She made it!” is what Sydney said. It took about 15 minutes for Sydney to be able to hold her.  The neonatologist made the decision to intubate Grace because she wasn’t able to breath on her own.Feeling of instant loveWhen Sydney was finally able to hold Grace, she described the experience as, “They put her in my arms, and it was just instant love for her.”  They were able to have their other two children meet Grace and hold her and give her love.Their four-year-old daughter kept saying, “Grace loves me! Grace loves me!”  Sydney said, “She wasn’t a normal looking baby..Grace’s nose was deformed and she only had one nostril.  She had a very large head and her eyes were close together..but my kids didn’t care one bit.Living for five and a half hours“I’ll never forget that experience of holding her and loving her.” Sydney shared.  They were able to get a video of their time with Grace, something that they will always cherish.  Many of their family members were able to meet Grace and hold her.This is something that Darren said, “I think she blessed everyone’s life that she came in contact with.  I think everyone who held her was changed.”Her impact is still feltSydney first thought it would be weird to hold Grace after she passed away.  However, she said, “..it was so interesting cause there was still so much comfort in just holding her little body.  I still felt very much at peace about the whole thing and she was still my little baby that I was holding.”In preparation for her burial, Sydney’s 17-year-old brother was able to help her get Grace ready.  She recalled the sweet experience as, “..you’d think that for a teenage boy, emotions are beneath him, but after we left, he looked at us in tears and said, ‘Thank you so much for letting me come.  It was definitely a different experience holding her..thank you so much.

Sydney and Darren courageously chose life despite being told that their daughter had a fatal condition.  Grace was diagnosed with alobar holoprosencephaly.  She lived for five and a half hours and greatly impacted those around her.  Finding Beauty in Your Baby's Death Your baby is going to die When they had their 20-week ultrasound Darren and Sydney received news that no parent wants to hear.  The ultrasound tech said to them, “There’s something that’s a little different, but I don’t know what it is.  I’m going to have the doctor look at something, so we’ll be back.”   After the doctor came in, he confirmed the sonographer’s suspicion.  He wasn’t sure exactly what was going on and referred them to see a specialist.  Luckily, the specialist was able to see them the same day. They were told that their baby didn’t have any separation between the two hemispheres of her brain. Grace has alobar holoprosencephaly, a fatal condition. Subtly bringing up abortion After receiving their diagnosis, the doctor talked with Darren and Sydney about their options.  They recalled him talking about their ‘options’ even though the only option he really talked about was abortion. Darren recalled him talking very, very fast talking about what Grace had.  Finally it occurred to Sydney and Darren that they only had two options abortion or carrying to term.  “He presented the abortion option, and it was subtle and kind of..smooth. However, the other option was the one that we chose.” said Darren. Only wanting the chance to see her and hold her Sydney asked, “What’s the likelihood that she’ll make it to birth?”  Her doctor replied, “You know the probability is high.” even though he brought up abortion first. This made both Darren and Sydney feel like he wanted them to chose abortion. “She made it!” At 37 weeks Sydney was induced to prevent the need for a C-section.  “We went in for the inducement, and labor went pretty smoothly. Towards the end, the baby’s heart kept dipping, and that was really stressful to me because I just wanted her, I just wanted to hold her.” Finally, Grace was born and let out a tiny little cry.  “She made it!” is what Sydney said. It took about 15 minutes for Sydney to be able to hold her.  The neonatologist made the decision to intubate Grace because she wasn’t able to breath on her own. Feeling of instant love When Sydney was finally able to hold Grace, she described the experience as, “They put her in my arms, and it was just instant love for her.”  They were able to have their other two children meet Grace and hold her and give her love. Their four-year-old daughter kept saying, “Grace loves me! Grace loves me!”  Sydney said, “She wasn’t a normal looking baby..Grace’s nose was deformed and she only had one nostril.  She had a very large head and her eyes were close together..but my kids didn’t care one bit. Living for five and a half hours “I’ll never forget that experience of holding her and loving her.” Sydney shared.  They were able to get a video of their time with Grace, something that they will always cherish.  Many of their family members were able to meet Grace and hold her. This is something that Darren said, “I think she blessed everyone’s life that she came in contact with.  I think everyone who held her was changed.” Her impact is still felt Sydney first thought it would be weird to hold Grace after she passed away.  However, she said, “..it was so interesting cause there was still so much comfort in just holding her little body.  I still felt very much at peace about the whole thing and she was still my little baby that I was holding.” In preparation for her burial, Sydney’s 17-year-old brother was able to help her get Grace ready.  She recalled the sweet experience as, “..you’d think that for a teenage boy, emotions are beneath him, but after we left, he looked at us in tears and said, ‘Thank you so much for letting me come.  It was definitely a different experience holding her..thank you so much.

Sydney and Darren: Alobar Holoprosencephaly