Help Harlan's heart

Harlan Kenneth Johnson was born in June 2018 to parents Candice Smith-Johnson and Robert Johnson and proud sisters Mya and Tessa, in Nova Scotia, Canada. Harlan suffers from Heterotaxy Syndrome; a syndrome which can affect multiple organs in the body and quite often affects the heart. Each case (about 1 in 10,000) are different from the next making finding a diagnosis difficult. Harlan was born with no spleen (Asplenia) making the risk of infection high, so antibiotics for the majority of his life is a must. He has an abnormal placement of his stomach, gallbladder and liver, and his intestines are malrotated. The major issue is the affect Heterotaxy has on Harlan's heart having been born with a congenital heart defect. He has required surgery as his heart went into heart failure soon after birth.

Treatment #1-Multiple surgeries

Because of Harlan's condition he was born at the IWK Health Center in Halifax, NS, and his parents have worked closely with the IWK and SickKids The Hospital for Sick Children in Toronto, Ontario, to find the absolute best course of treatment and map out a plan. The difficult part of mapping out a treatment plan is the severity of Harlan's Heterotaxy with new situations arising almost daily, forcing treatment plans to change. For example, Harlan has no spleen which is the bodies source of it's own immune system. An average cold could have detrimental effects on his health, causing changes in his treatment. However, what is know is that four surgeries will take place. The first has already occurred at SickKids. The surgery is know as pulmonary artery banding and involved a band being placed around Harlan's pulmonary artery to control blood flow to the lungs. This in turn has slowed down his rapidly beating heart rate to allow his tiny body to grow. With the growth of his body he will then be able to have his second and major heart surgery know as Glenn Procedure. This too will be done at SickKids around the time Harlan is 6 month of age. His third heart surgery know as Fontan Procedure will be done between two to three years of age. This procedure will hopefully be the last surgery Harlan's heart will have to undergo. But being born with a single ventricle heart, means Harlan will have life long care and monitoring.

But before the second heart surgery Harlan must undergo a surgery to straighten his malrotated bowels. This will prevent any future twisting of the bowels causing an emergency surgery. Harlan is currently scheduled to undergo this surgery at SickKids the first week of August.

Treatment #2 - Ongoing care

Treatment in the form of medication is needed to control blood clotting (as he has suffered a right sided stroke), medication for his heart, and to treat his Asplenia (no spleen). Other treatments are not known at this time, but with many unknowns throughout this process, more may arise. Funds are needed as soon as possible. This process of surgeries, recovery, and intense care will be ongoing to the better part of when he reaches the age of five, when travel from home in Nova Scotia to SickKids in Toronto, Ontario slows down.

At this time, monetary donations are the only way to help. Many supplies such as a stethoscope, and monitors need to be purchased for when Harlan is finally allowed to go home for the first time. Medication is expensive but will help him to survive and will be needed for years to come. Funds will also be used to help cover costs associated with traveling to and from home in Nova Scotia to SickKids in Toronto, Ontario; accommodations; and transportation for family to visit Harlan when at the IWK Health Center in Halifax, N.S.

Urgency

There is urgency due to the costs of Harlan's care which has started to accumulate, with one surgery completed and a second due to be completed this week. Special care, medications and costs have and will continue to grow. Without all of these Harlan's life would be at extreme risk.