With so many questions about Ren and such an outpouring of love and concern from friends and family, we are simply unable to keep up with all the texts and phone calls as we are focusing our energy on Ren in our day to day. Because of this, and the road that lay ahead for all of us, we have decided to use this blog as way for anyone that is interested to stay updated on Ren’s world.

Today is May 15th, exactly one week into Ren’s life, and already there is so much to tell. We have experienced joy and sadness, triumphs and setbacks, hope and defeat, laughter and anger, clarity and madness, and above all else, unimaginable love. Because we hope this blog finds it’s way to any parent who finds themself in a similar situation, we are going to start at the beginning.

In July of 2012 we were thrilled to learn that we would be having our first child in the spring of 2013. We decided to take the route of using a birthing center and midwives to monitor our pregnancy and deliver our baby. It had been an uneventful pregnancy until week 28 when an ultrasound revealed an elevated AFI (amniotic fluid index) which led us to a perninatologist that believed this was a result of a lack of fetal swallowing, caused by an esophageal fistula or atresia; we were told that this could be fixed with a single surgical procedure as soon as he was born. The polyhydramnios (elevated AFI) was monitored throughout the remainder of the pregnancy and even reduced at one point by a procedure called an amnioreduction, which involves inserting a giant needle into the uterus and draining the fluid. By week 37 the perinatologist decided that it was time to go in and get the baby out with a scheduled C-section, so we made plans to do so only 3 days later.  However, that night Devona awoke to pain and bleeding and we immediatley rushed to the hospital where she underwent an emergency C-section.We later learned that the bleeding was a result of a placental abruption due to the polyhydramnios pushing her uterus to its limits. Once the baby was out, it was immediately evident that there were bigger problems than a malformed esophagus. Despite best efforts, he was not improving even with the administration of oxygen and other triage efforts, and we were informed that there was nothing more that could be done for him and that our time with him was very limited. He was brought to us so that he could be in our arms as he made his way out of this world. How could this happen with a baby that appeared to be so perfect? This was only the first of many questions that would arise.

After the little warrior boy that was sent to save human hopes and dreams in The Neverending Story, we decided to name our son Atreyu. As the emotional maze began, so did the questions. After a long process of autopsy and pathology analysis by a specialist as Stanford University, it was concluded that Atreyu had been a victim of SMA (Spinal Muscular Atrophy.) Because SMA is diagnosed with a blood test, and no blood was drawn during his short life, it was impossible to get a definitive diagnosis. However, based on the pathological evidence, the Stanford specialist believed that it was SMA.

The next 2.5 years involved much learning about the disease of SMA and genetics. Spinal Muscular Atrophy has wide range of severity and onset, but it is the number one genetic cause of death in infants. Currently, the statistics show that 1 in 40 people are carries of the SMA gene. There are multiple ways in which it can be passed and hidden in genes, so it is important to involve a genetic specialist in any testing or risk assessment for concerned parents. It is easy to trust doctors to be knowledgeable, but genetics is incredibly confusing and difficult to navigate, so a specialist is the only one that should be sought for answers to genetic questions. Because the specialist from Stanford concluded that it was SMA, our first step was to be tested as carriers; we both tested negative. To give you an idea of the complexity of genetics, both parents testing negative does not mean that you could not have passed this on. There is a list of things that make this possible: germ line mosaics and de novos, X-linked types, and unusual deletions and mutations that sneak past an unmarked carrier test. At the end of it all, it was the opinion of our genetic doctor that Atreyu had been victim to SMA, but had acquired it through a spontaneous mutation rather through genetics. We were told that our future pregnancies held a risk of 3-4%, no higher than any other healthy couple.

With such optimistic numbers, we were ready to have a second child going in to the fall of 2015. It took no time at all and by September we were pregnant. Because of our history, it was advised that we remain under the care of an OBGYN as well as a perninatologist, just to be safe. After such a harrowing experience, all safety measures were welcomed. The pregancy was moving along beautifully and eventually arrived at a point that we were told by the perinatologist, “Unless I start making stuff up, there is no reason for me to see you any longer, and insurance won’t continue to pay.” This was music to our ears.

Within a couple of weeks, a routine glucose test revealed that Devona had borderline gestational diabetes. We returned to the care of our perinatologist to address the issue and were able to manage Devona’s blood sugar through diet and excerise, using multiple tests a day to make sure she was within her target numbers. Devona was amazingly disciplined to achieve this without the use of any medications. During this time, Devona’s ultrasound numbers indicated a return of polyhydramnios, but not nearly as severe as the first pregnancy. This time we were told that the polyhydramnios was a result of the gestational diabetes. Anatomy scans, measurements, observation, and even chromosomal testing all failed to raise any red flags. To be sure of things with this pregnancy, we went as far as to take placental samples to send off for chromosomal testing, which is much more in-depth than the screenings that are generally done for genetic/chromosomal disorders; these tests failed to raise any concern, as they all apeared normal.

With the polyhydramnios stable, we remained under the care of both our OBGYN and perinatologist for the rest of the pregnancy. Every week we had separate appointments with both doctors and every perinatologist appointment involved an ultrasound. Every week we were told that he was a healthy, happy baby and was right on track. As we neared the due date we were urged to reconsider our desires to have a VBAC (vaginal birth after cesarian) due to possible complications that could put mom and baby in harms way after we had worked so hard to make sure he was healthy and strong. We agreed to a scheduled C-section to keep everyone safe, and scheduled it for May 8th, Mother’s Day.

The morning of the scheduled delivery came and we checked in to the hospital with the excitement of finally meeting our son filling us. After a few delays due to other deliveries going on in the hospital, it was finally time to head to the OR and get that little guy out. Devona was prepped and I was brought in to join her before the medical team got started. It was at this point that we were informed that the growing number of people was just a precationary measure due to our history, and consisted of a neonatologist and his team. After being led to believe that we had nothing to worry about for 40 weeks, this immediately drudged up some terrible familiar feelings/memories. The doctor got to work and after 10-15 I was told that I could stand up and look over the medical drape to see my son being brought into the world. Right away, concern was raised by the OBGYN and our son was quickly passed off to the neonatologist and his team. It was suddenly all feeling too familiar.

Time stands still and races all at once. Certainly this couldn’t be happening again. What about all the tests and doctors’ reports that assured us that this wasn’t happening? It doesn’t matter what we had been told, this was happening and there was nothing we could do to change it. We were wide awake inside of a nightmare.