Our appointment was 4 weeks out, so we played the waiting game. All we knew is that our baby had VSD. We didn’t know the severity of it. After our first echocardiograph we were informed that our baby not only had 1 heart defect but 3. We were bombarded with information. After finding out some good news…. the nurse told us we were having a BOY! That was our highlight for our 4 hour appointment.
We were also told that I would most likely have to be on bed rest. I would have to relocate to the cities at some point to be closer to the hospital for delivery, and I would have to have a c-section. We were also informed that baby Riek WOULD have to have open heart surgery. It is no longer a matter of if, it is a matter of when and how many surgeries he will need. Each surgery he will have to be in the hospital for 4-6 weeks. Mortality rates were higher than anticipated when going in. Two of the heart defects are rare and only 2-4 babies are born with these heart defects in Minnesota each year. He has VSD, transposition of the greater arteries, and PS(Pulmonary Valve Stenosis). We had genetic counseling and testing, as of now nothing is linked to genetics. There will be more genetic testing after he is born.
We were a bit emotional leaving this appointment, and as you can imagine, we had tons of questions. All of the unknowns started adding up. Our next appointment was scheduled for 4 weeks out. Again our patience and strength was being tested.The staff at Abbott’s and Children’s in Minneapolis have been nothing but supportive, caring and helpful.
Aug. 7th we met with our son’s NICU team, his lifelong cardiologist, his heart surgeon, our social worker, and went on tours of the different parts of the hospital we would be at during our stays. We were told three different massive open heart surgery options. All of which will not be able to be determined until our baby boy is born. Since the baby relies on the mother in the womb, they need to wait to see how he can breath and function on his own. They also look at each baby’s physical anatomy of the heart. He will for sure be in the NICU after birth. From there it is unknown what surgeries he will have and when he will have them. They might have to put in a stint or do other minor heart operterations to keep him stable until he grows large enough for the first massive open heart surgery he will need.
Two of the open heart surgery options require our little man to get a valve replacement. We are praying he does not have to have this, but it is looking like he will need a new pulmonary valve. Which would require a donor valve or a cadaver valve. These two options would require life long surgeries.
With all of the unknowns we do know that every medical expert we have come in contact with the last 3 months has told us to do what we can to collect both the cord blood and cord tissue. They currently are able to successfully grow a human heart valve out of the cord blood and tissue. However, they have not been successful at having it lasting inside of a human as of yet. But in ten or twenty years….who knows what medical advancements will happen. It is expensive to collect and store the cord blood and cord tissue. Financially we are going to struggle with me having to take unpaid time to have the baby, relocation costs, travel expenses, parking, food, and medical bills. So we are asking our friends and family in lieu of gifts or clothes that you would consider donating so we can put any money raised towards his cord blood/ cord tissue collection.
We would like to say thank you to all of our family and friends who have already sent kind messages our way. The power of prayer is huge. Please keep our little guy in your thoughts and prayers. We again thank you from the bottom of our hearts.
I will do my best to update you as we find out more information.
~Love Cassie, Jake, Jayla and Baby Boy Riek
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