Just the beginning

Hello everyone! I decided to create this blog to not only document our journey but to hopefully reach out to other families with heart babies. 

             My husband and I are 26 weeks pregnant with our first child. On the morning of April 8, the morning we were leaving for our honeymoon, we had our 22 week anatomy scan ultrasound. The doctor came in with devastating news. There was something wrong with the left side of our little one’s heart. We were referred to a high risk perinatologist in Reno to be given more definitive answers.

                We decided that we would still go on our honeymoon and enjoy it the best we could.  We thought spending our honeymoon with a little worry and lot of prayers was a much better choice than in mourning. Up until this point we had not wanted to know the gender of our baby and wanted it to be a surprise at birth. After a little thought, we wanted to know who we were praying for.

We are praying for our son, Colston James Krische.

                On April 16, we had our appointment with the perinatologist and pediatric cardiologist. After an hour long fetal echocardiogram we were ushered into a conference room and given the results.

                They found that our son has a very poor functioning left ventricle and his aortic valve is showing very little blood flow. Lots of medical terms were thrown at us that day and they could not give us a definitive diagnosis but basically it came down to needing to strengthen the left ventricle and widen the aortic valve for proper blood flow. The pediatric cardiologist immediately began trying to get in touch with his colleagues in Las Vegas to see if we were candidates for in-utero intervention. After about three days of trying to get the team of doctors together, he decided he didn’t want to wait any longer and began talking with other colleagues in San Francisco at UCSF. UCSF called us almost immediately.

                We spent two days at UCSF running more ultrasounds and echocardiograms and even had a fetal MRI on his brain. We were ushered into yet again another conference room but this time with the surgeon, a social worker, a nurse and another doctor.

                We were given the official diagnosis of Severe Critical Aortic Stenosis with evolving Hypoplastic Left Heart Syndrome (HLHS). 

                This condition is very rare. 1 in 10,000 babies are born with it and only 1 in 10 of those babies are a candidate for intervention in utero. We just so happen to be a candidate.

                The surgeons at UCSF believe that expanding a balloon catheter in the aortic valve to open it up will not only generate better and more sufficient blood flow, but will help strengthen the left ventricle with the hopes of preventing HLHS.

                The chances of this working are slim. 25% to be exact and three out of four babies that have this intervention are still born with HLHS. We feel like we have to give our little man this slim chance.

                So what will happen to Colston if this doesn’t work?

If Colston still develops HLHS by the time he is born, there are three heart surgeries that will be needed. The first surgery is done the first week of life, the second around 4-6 months, and the third around age 4-5.  The doctors say that to make it to age 5 with this diagnosis is a feat in itself due to the nature of the surgeries on the heart. Eventually a heart transplant may be needed, however, we don’t know when that will be. It could be when Colston is 5 or 50 or possibly never.

                This procedure is technically experimental. We agreed to be a part of a research study with the hopes of helping another child with the same diagnosis in the future.