"Noah's Children really empowered us to make decisions, and that was incredibly reassuring as a parent." —Alastair Monk, Father
For 32 weeks, Nicole Monk and her husband Alastair had little reason to think her second pregnancy would be any different from her first. But when an ultrasound raised a red flag and a referral for a fetal MRI which then led to a diagnosis of semi-lobar holoprosencephaly for their daughter Grace Mackenzie, within days everything changed. Because this condition arises from an abnormal division of the forebrain into left and right hemispheres very early in gestation, it is typically diagnosed around 14 weeks. However, since Grace wasn't diagnosed until months later, Nicole and Alastair were given little time to process, let alone plan for what it all meant moving forward. "It was like drinking from a fire hose of information," Nicole recalls. "But when we first met with Noah's Children, it was the first time we felt like there were people who could help us get through this. "They slowed things down so we could handle getting ready for Grace in such a short period." "It was the first time somebody really took a breath and asked how we were doing and what we thought about what was happening, as well, " adds Alastair, "rather than throwing a lot of medical information at you and saying, "we'll see you in two weeks." They really empowered us to make decisions, and that was incredibly reassuring as a parent."
What came across quite clearly for me during this process is you won't necessarily find the big miracle; however, you may find a series of little miracles along the way, and when she was born breathing well on her own and could suck and swallow, to now when she acts very much like a normal child, you're able to really appreciate those small blessings as they come and just sort of go with them."
Of course Nicole and Alastair understand Grace's condition is life limiting and there will come a time when they'll lean on Noah's Children for more than biweekly home visits and check-ups. But for now they say, they're more than happy to be where they are. "When you find out something like this, you're at a place no one should be," Nicole says. "But this is what Noah's Children does every day-they help you appreciate what you've been given again, and to love and care for your baby for as long as you have them."