Our journey with HLHS began on November 23, 2015.

On September 11, 2015 we found out we were going to have our 8th little blessing.  We were all very excited, and could not wait to add Silas to our lively family.  The beginning of the pregnancy was pretty typical of all the others, ALL DAY sickness.  It is always hard to get through those first 15 weeks and to the point of feeling the baby kick and move.

From the beginning of the pregnancy I felt things were going to be different.  I did not have fear, but thought God had something in store for this little one.  In previous pregnancies I never had genetic testing, figuring the outcome would not matter.  We would keep and love the baby no matter what.  This time when we had the option to have the Nuchal Translucency test done I told Boyd for some reason I feel we need to do this.  The tests include a level two ultrasound to measure the anatomy of the baby, especially the fluid in the neck, and a blood draw.  These two tests combined then give a percentage of the probabilities of Down Syndrome or a Congenital Heart Defect.  He thought I would just worry myself over any little issue they would find.  In the past every pregnancy has presented a challenge, but never had any major effect on the baby.  In the end we decided to have the tests.  Why not?  It would at least prepare us for having a baby with special needs, if that is what the tests conclude.  Also, I am 40 now, and although that is a young age to have a baby today, I knew my chances were higher for certain syndromes.

The day after we got back from an amazing two week trip to Cancun, Mexico we went to have the test done.  I was 13 weeks and 6 days – the last day to have the test performed.  We were both excited to see a growing baby with a beating heart.  He had perfect little hands and feet.  As the ultrasound tech was scanning Silas, I knew the nuchal fold was measuring high.  When she was done, she said the Maternal Fetal Medicine (MFM) doctor would be in to discuss the results.  I immediately looked over at Boyd and said “We are going to get some news on the baby that is not going to be good”.  Twenty minutes later, three people returned to our room.

The doctor, tech, and genetic counselor all had that look that they had something important to tell us.  The doctor began to explain that Silas was still young, but he could see a major heart defect.  The left side of his heart was not visible.  He called it Hypoplastic Left Heart Syndrome: A very rare and severe congenital heart defect that is one of the most complex.

Each child with this syndrome is different, and many other complications of the heart can also go along with HLHS.  There is no cure, but so many advances in medicine have been made to give these little babies a chance at life.  Thirty years ago, there was little that could be done for these children but to provide comfort care.  They still offer that option and also termination.  The doctor asked how we wanted to proceed.  Of course, we wanted to give this baby a chance at life, and we would do whatever it took to do that.

The doctor gave us hope in saying these children have a very rough road, but that they can grow up to live active lives.  Treatment for this condition is a set of three open heart surgeries or a heart transplant.  The first surgery would be within days of birth, the second at around six months, and the third at 2-3 years.  Several other smaller surgeries can be necessary.  It all depends on the child and how severe his condition is, and we won’t know that for several weeks.  These babies become immediately sick as soon as the cord is cut.  We were also told that we would not be able to deliver at the local hospitals.  We would need to go to a children’s hospital that has a special cardiac center.

Thankfully we live just an hour and a half away from one of the top 10 pediatric cardiac hospitals in the nation-Cincinnati Children’s Hospital.  I was also told to relocate closer to one of those hospitals several weeks before birth to ensure that Silas can receive immediate care.  I have fast labors and have often delivered early.  I have had births as early as 34 weeks.

The doctor also found the nuchal fold was at 4.8mm – it should be around 2mm.   The doctor felt that it was thick due to the heart defect and not a chromosomal issue since nothing else on the ultrasound pointed in that direction.  The heart does not fully develop until 20 weeks, and until then we would know the severity of the defect.

We were then introduced to a genetic counselor.  She explained the blood test, but we were kind of in a zombie state of mind.  She told us to expect very high percentages that would indicate a chromosomal issue, but that did not mean this was a chromosomal issue like Down Syndrome or Trisomy.  She said a lot of congenital heart defects are just a “fluke”.  Of course, my first question was “Did I do something that caused this?”  She assured me that since I was not on any medicines that it was just something that happened.  We were to receive the blood results in a week, and then get a second specialized blood test that would give a 95-99% accuracy for identifying chromosomal conditions.  I did not want to risk doing an amnio so this was the next best thing.  We were also to return in three weeks to get another ultrasound scan to see how the heart was doing.

We walked out into the hallway in silence.  This was a huge shock and enormous amount of information to take in in a matter of three hours.  Boyd turned to me and hugged me, that is when I completely broke down.  Our minds were racing.  I felt like my world had just been crushed.  All we could do is turn to our Savior and begin to pray for a miracle for our little baby. He already gave us one miracle: Impressing me to get this testing done.  If we did not know about this condition at birth, our precious Silas would not have the best chance at surviving.   I tried to pull myself together for when I walked through the door and faced my other children.  The older ones could obviously tell I had been crying, crying a lot.  They were pretty silent while the younger ones came running like they had not seen us in days.  I could not keep it together and continued to cry which confused them.  The older ones were too afraid to ask what was wrong.  We sat down at dinner and tried to explain something we did not quite understand ourselves in a delicate manner.  This is where our journey with HLHS began.