The Beginning of Our Journey

It was 6:30 the night after our 20 week ultrasound. We had spent the day looking up boys names and sharing the news with some friends and family. Having had two miscarriages the year prior, I was hesitant to be too excited. I just had that feeling, and those fears were realized when the phone rang. 

I remember feeling as though I was watching myself from the outside as she said the word 'anomalies'. The ultrasound had taken a long time, and there was no reassurance that everything looked fine - just that it would be reviewed and they would let us know. But I really thought I was being paranoid and could never have anticipated what was all to come in the next few months. Not that anyone could have.

I was told that Kilians lateral ventricles in his brain were dialated, which meant that he had ventriculomegaly. When I asked what that was, she said that he may need to have a shunt put in to drain the fluid if it turned into hydrocephalus - pressure in his brain. They were also concerned, she continued, because while they were able to detect a heartbeat, they were unable to visualize it. And the last thing she said, was that he was measuring quite a bit behind in gestational age.

My mind started racing, the tears welled up, and I fought to bring myself to tell Kevin. All day I had tried to reassure myself that it was OK, the scan went fine and the baby was fine, but here it was. My biggest fear confirmed and I sobbed as I relayed the information to Kevin.

We were immediately referred to a doctor, and my plan to have a natural, birth center delivery with no medical intervention was thrown out the window. An ultrasound with this doctor happened in the next week, and confirmed the diagnosis - his vents were dilated. Mild, but dialated none the less. It didn't stop there. On top of the ventriculomegaly, they too found that he was measuring behind. The best they could do was assume the original gestational dating was incorrect, and pushed my due date out. Instead of 21 weeks along I was now 18. As far as his heart went, they were able to visualize it, however it wasn't where it belonged. Instead of being on the left side of his chest, it was found on his right. Dextrocardia. Another anomaly added to the list.

From here, we were referred to a perinatologist, and had another scan. First there was one ultrasound technician, she grabbed another, and then the perinatologist came in, and they all marveled at the screen. In addition to the Ventriculomegaly and Dextrocardia, they were only able to locate one kidney - and it was in his pelvis. As long as it worked tho, they said, he could live a 'normal' life. 'Normal' was so far from where I saw things lying, but at no point was termination offered, although I really contemplated what I was asking of this poor baby and what the quality of his life was going to look like. Even though the nagging thought ached in my bones, no one was suggesting this or that he was going to die from his conditions, so we continued on.

Our next step was to have an echo for his heart. It was surreal walking in, as I questioned why me? Why my baby? The echo confirmed the dextrocardia and added another piece of his puzzle - they weren't finding his right lung. There was a question all along if maybe it was just small, but we eventually found that it was completely missing - along with any anatomy going to and from it. One lung. One pelvic kidney. Ventriculomegaly. Dextrocardia. It was then suggested that perhaps he had Heterotaxy - a genetic condition in which multiple organs are either missing or misplaced (along with so many other possible problems) , and it completely devastated me.

Digging into each individual diagnosis made my head spin. One of these things by itself could worry a person sick, but all of these things stacked against him? I questioned what I had done in my life, as if my double rainbow babys 'defects' were somehow punishment for my wrong doings. I questioned if something I did caused it. I questioned if he would be born alive. And I felt like it was somehow all my fault. The guilt took my every breath, and the fear paralyzed me.

I put myself into auto pilot and started digging into each item on the list - trying to prepare myself for which surgeries he would need, which medications he would be reliant on, what other complications would be caused. Still questioning whether or not we were doing the right thing, should we have ended it for his sake? What in the world was I doing, asking this baby to live a terrible life for my selfish want of another child - but it was too late for that anyways even if I could have brought myself to do it. A few more ultrasounds and a second echo later, I was referred to Childrens Hospital in Milwaukee.

After confirming the diagnoses, they gave me the last piece of Kilians puzzle, and at this point I think my eyes probably glazed over and I went to the very darkest corner of my soul. He was once again measuring behind in growth, and was given the final diagnosis of Intrauterine Growth Restriction (IUGR). I felt like I had completely failed this child.

I was scheduled for weekly ultrasounds to monitor the IUGR. If at any point he stopped receiving adequate umbilical arterial flow from me, he needed to come out. He would basically starve to death if not. I was also scheduled to have a fetal MRI to get a more detailed look at all of his anomalies, and so it could be decided if he was OK to deliver in Neenah or if we needed to be in Milwaukee - the latter seeming to be the preference of Milwaukee, who assured me a whole team would be assisting in his care, giving him the very best chance possible.

We had so many little things discovered in the meantime, most of which thankfully resolved on their own. Hydrops, Pericardial Effusion, Plueral Effusion, VSD, decreased umbilical arterial flow, polyhydramnios, his vents would increase one week and decrease the next - it was an emotional roller coaster. One week I would feel ok, like it was possible he was going to make it and be ok. The next, I would learn about another medical diagnosis and slide into preparing myself for another loss, and discussions were had regarding decisions needing to be made in the event of his passing.

But thru the weeks I learned to enjoy my ultrasounds with him. We had a different kind of bond in the sence that I learned his personality early on in by watching him on the screen. He amused the technicians. We laughed. Sometimes it was actually fun. I reminded myself that whatever would come of this journey was well beyond my control, and tried my hardest to focus on the time I had with him. The closeness scared me, if we lost him it was only going to make it hurt more. But how can you not fall madly in love with your child? I was infatuated with him and seeing his precious little face every week helped me realize, regardless the outcome - it would all be worth it.