Support for Baby Rowan’s Open Heart Surgery

The family of Danielle & Sage Phelps are asking for your help.

Their son, Rowan, at just 7 months old, was diagnosed with a Congenital Heart Defect, Pulmonary Vein Stenosis, Severe Pulmonary Hypertension and associated Congestive Heart Failure.

Rowan had been struggling with eating, weight gain and failure to thrive during his little life, but things had been getting worse recently. Just before this past holiday week, on December 16th, Rowan went in for some testing to look further for a cause of his health concerns. The doctors noticed his heart was enlarged on an X-ray image. Rowan was then sent directly to see a pediatric cardiologist, where they preformed an EKG and and Echocardiogram on his heart. That resulted in finding out he had several problems.

Rowan has a Congenital Heart Defect called Atrioventricular Septal Defect (AVSD), Severe Pulmonary Hypertension and has Pulmonary Vein stenosis.

This means that he has a hole between the upper chambers of his heart (ASD) as well as a malformed Mitral valve that is very leaky, in the left side of his heart. The pressures on the right side of his heart are quite extreme, and the left side of his heart is significantly smaller/weaker than it should be due to his defects. The pulmonary veins on the left side of his heart are too small and they narrow where they connect to the heart. This causes inadequate room for flow of blood back from his lungs, resulting in pressure and fluid build up in his lungs and pressure build-up in the right side of his heart.

These defects cause a problem with the way his blood flows through his body, it is causing problems with his lungs and breathing, and it makes his heart work harder than normal and not function as it should.

Rowan was admitted to the Pediatric ICU at Bronson Hospital in Kalamazoo, that same afternoon and placed on oxygen and heart monitors. Arrangements were immediately made by the hospital to transfer him to another hospital that specialized in pediatric heart defects and treatment. A few hours later, that very same day, he was transferred to the University of Michigan Mott Children’s Hospital in Ann Arbor, by special ambulance and admitted to their Pediatric CardioThoracic Intensive Care Unit (PCTU). Since then he has had numerous tests and procedures including in depth monitoring, chest X-rays, Echocardiograms, CT Scans and a Heart Catheterization. He was intubated and placed on a ventilator to help him breathe.

After collaboration by doctors, cardiologists, surgeons and nurses, they made a plan for him. He needed open heart surgery as soon as they could do it, to repair his heart and valve, and improve the blood flow returning to the heart from the lungs.

On December 23rd, Rowan underwent a massive Open Heart Surgery procedure to fix his heart. His surgery was over 5 hours long, with a team of pediatric cardiac heart surgeons doing their best to repair his heart as well as they could. They were able to patch the hole in his upper chambers, open and enlarge the pulmonary veins coming into his heart, and repair the malformed valve in the left side of his heart. This valve was extremely abnormal and the surgeons were only able to moderately repair it, meaning it is still a leaky heart valve. Rowan will be needing a surgery in the future to repair it again, or he may potentially need to have the valve replaced. The doctors are unsure of when exactly this surgery will be needed, but the hope is to allow him to grow and then operate again when his body and heart are larger. This will allow more options to complete the valve repair. The pulmonary vein stenosis (the narrowing of the small pulmonary veins coming into his heart) that he was diagnosed with could also be cause for concern in the future. This can potentially need further intervention, including heart catheterization or further surgery to widen the veins again.

Rowan is currently recovering in the Pediatric CardioThoracic Intensive Care Unit at U of M Mott Children’s Hospital in Ann Arbor, MI. He is being carefully monitored, continues to stay intubated and on a ventilator. He is on many different medications to keep him comfortable, to help relieve some of the pressure on his heart and lungs and to manage his pain.

Rowan has a long and rocky road to recovery ahead of him. There are many phases to his recovery. He will have good days and bad. We hope and pray for slow, steady improvement as he goes.

They are expecting Rowan to be hospitalized for an extended period of time, potentially many months.

His parents have been by his side every minute since the diagnosis on the 16th. Both Danielle and Sage have taken a leave from work so that Rowan never has to be alone and has the love and support of his parents around the clock.

We really appreciate any support to help Rowan and his family through this. There are many out of pocket expenses they are not prepared for, including costs outside of his hospital stay and surgery. He will have numerous doctor appointments with cardiologists, specialists, and surgeons. As well as future surgeries and hospital stays. The hospital is over 2 hours from home for them, so Danielle and Sage will be staying in Ann Arbor until Rowan is well enough to go home. Any donation at all is helpful to the family and please share this page.

We also ask for prayers and positive thoughts during this time, for Rowan’s full and complete healing and recovery, hopefully with no complications.

Thank you so much for your support for baby Rowan and his family!

We will continue to provide updates with Rowan’s progress. ❤️