Moira arrived at an appointment with the Neonatologist that first diagnosed Pike and recommended we end the pregnancy. She was armed with the most recent research on CDH (from her crack graduate team) ready to explore how best to support Pike.
The original doctor’s partner ended up seeing Moira. He had a similar view to the doctor that had originally diagnosed Pike, and felt there was little chance for the Pike to survive. He quoted an outcome study from 1970 that showed children with the severity of Pike’s diagnosis had no (as in zero) chance of survival. 1970 was long before they had implemented new technology and tactics such as extracorporeal membrane oxygenation (ECMO), a machine that does the work of both the heart and the lungs for those that are unable to provide an adequate amount of gas exchange to sustain life. Given Pike’s condition, he was likely going to need ECMO to survive. The research that Moira had gathered told a different story. It was clear that even in the last few years there had been significant strides in how CDH babies were treated. As a result, their probability of survival and quality of life were increasing. Although the survival and outcome data were still not great for kids with Pike’s severity.
Moira asked the doctor, “how many babies with CDH do you deliver each year?” He said, “usually no more than one or two, but we have a great Neonatal Intensive Care Unit (NICU) and would do what we could for your child.” This didn’t resonate with Moira. She left there less than confident with that doctor and committed to search for a new team.
We received a referral to a specialist that had experience delivering babies with CDH. In our first appointment with him he came across as knowledgeable, experienced and committed to the health of both Pike and Moira. He had not only delivered babies with CDH, he had also spent time with a team of surgeons that had researched and performed leading edge procedures for CDH. He felt confident that all is not bleak and while reiterating that our situation was one of the more extreme cases. It was not going to be easy. He was adamant that if there was any chance of success we needed to chose a place to deliver that was next to or affiliated with a hospital that had a NICU and team of surgeons well practiced in caring for babies with CDH.
One of the leading edge treatments he had participated with was a new procedure that was being done in Germany. He had worked with this team and felt it was a viable option, given the severity of Pike’s condition. This procedure would entail repairing the diaphragm while Pike was still in utero. It was high risk not only to the Pike, but also to Moira. The upside was if you fixed the diaphragm in utero, then the Pike had a higher chance of breathing on his own when he was born, and thus a greater chance to survive. Again, we needed to decide immediately because there was small window of time during the pregnancy in which this procedure could be successfully performed. That time was now.
We had committed to do everything possible to support Pike’s chance. We had just received a recommendation from a highly reputable doctor that has direct experience with babies with CDH, and he is telling us the best chance for Pike is to travel to Germany and put both Moira and Pike at risk. Oh, by the way, they had only been doing the procedure for the previous five years and didn’t have great data to compare to babies that have not had the procedure.
Where is the line? What are the criteria? Do OUR lives impact the equation? Our experience continued to push us into conversations that were about getting clear on what we cared about and why. In addition, we needed to determine what success meant for all the stakeholders, particularly Moira.
Moira’s attachment to Pike was beyond question. She was determined, committed and unwavering. I was committed, and Moira was the driving force for Pike. Everything she did was towards having a kid that survived. It was clear my role was that of support.
We decided not to go to Germany. The reward for the risk was not clear enough for us. That left us with the journey to find a team that had experience and the commitment to save Pike with us. One hospital continually came up. Recommendations by doctors, research data, publications and blogs that centered on kids with CDH. That hospital was on the East Coast and we where in the Midwest.
We began to make our plan. We would need to move there at least a couple of months before the due date and then stay for an undetermined amount of time after birth, assuming Pike survived. Both of our work was in Minneapolis. Moira was an associate Professor at the U of M and I was collaborating to build a consulting company where most of my prospective clients were based out of Minneapolis. Furthermore, our entire support system was in the Twin Cities, both of our families as well as many of our friends.
We had no idea what is in front of us and we thought that we could manage it, some how. We could alternate traveling back to Minneapolis, or we could just trust we could make it happen. If this is what was best for Pike, then that is what was going to happen.
As we where making plans to go out and interview the staff and surgeons, we also interviewed hospitals and teams in the Twin Cities area. It was not a confidence building process.
In our search for the best doctor, surgical team and hospital for us, we heard many different stories on how to approach the care for our child. The first extreme was the opinion the doctor at the initial ultrasound gave us, “I do not expect this child to survive….. I suggest that you end this pregnancy.” Another story we heard was something like this, “We agree with the diagnosis, your baby has a severe case of CDH and there is a low chance of survival. We will do whatever we can to help your baby. We can’t promise anything, but we will do what we can.” On the outside this may This sound like a good answer, and it was apparent that they were not committed to the results. Their statement felt like it lived out side of them, not a commitment that resided inside of them. From our perspective at the time, I wanted to hear something more than “try.” I wanted to hear what someone was willing to “do.”
I wanted to scream at them and ask them what the hell did that mean? What does it mean you will do your best? Is “try” all you have? What happens to those 25%? What causes the 75% to die? What the hell are you going to “do” for our Pike?
There was one last hospital that we interviewed. It was a local one that we had not focused on. A physician friend of ours suggested that we check the team out. He told us they have a great approach and a great reputation. A sensational neonatal care unit. I am able to write this story because of our decision to make an appointment.
Their story was different. The surgeon that we interviewed told us their perspective, “We agree with the diagnosis and that the chance of his survival is less than 25% based on the existing data. However, that data only is predictive for all cases as a whole. It does not tell us what is going to happen to your baby. Life is an individual fight. We will be in that fight with you and your child. We assume that each child can and will survive until they don’t. Our opinion is that your baby will need ECMO. Given that, there is even a larger risk for your baby. And, we believe ECMO will put him in the best position to survive.”
Their perspective lined up with ours. They are going to fight for our Pike. They had experience and a plan of they what to “do.” That hospital was The Children’s Hospital of MN. After a worldwide search, we ended up a few miles from where we lived.
Before we left, the surgeon had taken us on a tour of the NICU unit, introduced us around and explained more about their approach. They had a team approach and viewed the parents as an integral part of that team. In that discussion he shared more data about what we can expect on our journey. He said, “the fight for your son will not be your only fight. No matter the outcome of Pike, good or bad, the data shows that you will not be married at the end of this journey. This type of stress can destroy relationships, to the point where most of them do not survive. We feel that it is important to share this so that you can take appropriate action.”
Our state was sobering, heavy and ultimately a gift to us. We had found our team. We were determined, and we had no idea what was ahead of us. Nothing was certain.
To go to the previous entry, please click here.
To go to the beginning of Pike’s story, please click here.
To learn more about why I am writing this story, please click here.
To watch Pike teach my how to skateboard, please click here.