Supporting Demi's Heart Surgery Journey
Donation protected
Our beautiful baby Demi has been diagnosed at nine months old with congenital heart disease, more specifically, an Unbalanced complete atrioventricular septal defect (AVSD) with right dominance. This means she will require heart surgery and though we do not yet know when that will happen, we DO know that she will require round the clock care from her parents for the foreseeable future. We are hoping to fundraise enough so at least they won't have to worry about rent and bills during such an impossibly difficult time. So they can focus all their energy on loving their gorgeous baby girl. Demi's surgery and pre-op will be done at SickKids in Toronto, so we know that they will need financial support for parking, travel and hotel costs additionally. Whatever you can give is wonderful, and we thank you so much for your support and love at this time.
From Dani and Cole, Demi's parents:
"Demi has been struggling to eat and gain weight for some time now. After a number of ED visits and regular checkups that told us she was energetic, happy and healthy and being sent on our way, we finally started to get some answers. On Friday we went to Mac for this issue hoping to at least get a referral for a dietician. After a physical exam the doctor asked us if we knew that she had a heart murmur. We did not know. This immediately changed the course of the visit. Chest X-ray, ECG and blood work were completed and they suspected that she may have some abnormalities with her heart and decided to admit us to inpatient care. From there they started her on a strict feeding schedule and whatever she could not take orally would be fed through a nasogastric tube. Over the weekend we focused on nutrition until we could get an echocardiogram completed on her yesterday. The results from that test confirmed that she has a diagnosis of congenital heart disease specifically Unbalanced complete atrioventricular septal defect (AVSD) with right dominance. What this means is that Demi’s heart’s upper right chamber has a value that should have 2 small holes but only has one large one. This is causing her heart to pump extra blood into her lungs and the upper right part of her heart causing it to enlarge. She also has 3 holes in her heart and another valve that is leaky. Demi will require surgery because if this is not repaired it could cause pulmonary hypertension and other poor outcomes.
The tricky part about this is that this defect was diagnosed when Demi is almost 9 months of age. Typically, the abnormalities would be picked up from ultrasound in the womb or a birth and they are unsure why it wasn't picked up before. But this means we are behind on typical intervention age (around 6 months) and her heart has been working so hard that she hasn’t been able to gain weight like she should. So right now, as we wait for our cardiologist to consult with Sick Kids Toronto about how and when we will be able to do surgery will have to focus on nutrition in order to ensure she is safe. She will likely be sent home in a week or so with NG tube and we will administer her feeds at home while we wait for next steps.
We are shocked but we are going through the motions and processing while trying to remain as positive and strong for Demi. Although we are still very frustrated and confused by how many healthcare providers had seen her before they finally listened to us and found the issue. We have a great team at McMaster now that consists of Pediatricians, Dieticians, Cardiologists, Occupational therapists, Social workers, and of course our Nurses. We are very confident that she will recover and grow up to have a normal quality of life. However, she will need to be followed by cardiology for the rest of her life. Demi is currently in her normal happy active spirits and just loving meeting new people here at the hospital every day! Despite being poked and prodded all day long. She is such a trooper and we are so proud of her."
From Dani and Cole, Demi's parents:
"Demi has been struggling to eat and gain weight for some time now. After a number of ED visits and regular checkups that told us she was energetic, happy and healthy and being sent on our way, we finally started to get some answers. On Friday we went to Mac for this issue hoping to at least get a referral for a dietician. After a physical exam the doctor asked us if we knew that she had a heart murmur. We did not know. This immediately changed the course of the visit. Chest X-ray, ECG and blood work were completed and they suspected that she may have some abnormalities with her heart and decided to admit us to inpatient care. From there they started her on a strict feeding schedule and whatever she could not take orally would be fed through a nasogastric tube. Over the weekend we focused on nutrition until we could get an echocardiogram completed on her yesterday. The results from that test confirmed that she has a diagnosis of congenital heart disease specifically Unbalanced complete atrioventricular septal defect (AVSD) with right dominance. What this means is that Demi’s heart’s upper right chamber has a value that should have 2 small holes but only has one large one. This is causing her heart to pump extra blood into her lungs and the upper right part of her heart causing it to enlarge. She also has 3 holes in her heart and another valve that is leaky. Demi will require surgery because if this is not repaired it could cause pulmonary hypertension and other poor outcomes.
The tricky part about this is that this defect was diagnosed when Demi is almost 9 months of age. Typically, the abnormalities would be picked up from ultrasound in the womb or a birth and they are unsure why it wasn't picked up before. But this means we are behind on typical intervention age (around 6 months) and her heart has been working so hard that she hasn’t been able to gain weight like she should. So right now, as we wait for our cardiologist to consult with Sick Kids Toronto about how and when we will be able to do surgery will have to focus on nutrition in order to ensure she is safe. She will likely be sent home in a week or so with NG tube and we will administer her feeds at home while we wait for next steps.
We are shocked but we are going through the motions and processing while trying to remain as positive and strong for Demi. Although we are still very frustrated and confused by how many healthcare providers had seen her before they finally listened to us and found the issue. We have a great team at McMaster now that consists of Pediatricians, Dieticians, Cardiologists, Occupational therapists, Social workers, and of course our Nurses. We are very confident that she will recover and grow up to have a normal quality of life. However, she will need to be followed by cardiology for the rest of her life. Demi is currently in her normal happy active spirits and just loving meeting new people here at the hospital every day! Despite being poked and prodded all day long. She is such a trooper and we are so proud of her."
Organizer and beneficiary
Nikki Campbell
Organizer
Port Dover, ON
Danielle Campbell
Beneficiary