The worst day of my life...

At our 23 week ultrasound there was an “abnormality” noted. Dr. Pauli was reading that day and came in and tried her best to explain an incredibly difficult situation to explain. Baby A, our little boy appeared to have a mass in his brain. They couldn’t tell for sure exactly what it was. It had multiple densities on the ultrasound and appeared somewhat cystic.  Their best guess was blood. They thought he had an intraventricular hemorrhage at some point over the past 3 weeks. I had no trauma so it made a bleed rare, but possible. They also introduced the idea of something called neonatal alloimmune thrombocytopenia which is basically my body making antibodies against the baby’s platelets. Again extremely rare especially since baby B was perfectly fine. Although with the research I did with the babies being fraternal it is possible just again ridiculously rare. They also introduced the idea of tumor, however felt it was less likely as it was large and typically tumors do not grow that quickly. They scheduled me for a fetal MRI(I had never heard of this prior) on 9/14/12.

I am a doctor… this means I deal with pretty much everything differently than lay people when it comes to anything medical. I looked at the pictures, I knew it wasn’t good but being a neurologist I knew that early injury can still do well. It was big, took up most of the right side of his brain and pushed some onto the left. His head was measuring big, 26 weeks instead of the 23 it should have been.  There wasn’t any definite hydrocephalus at that point but I felt like I couldn’t let myself be optimistic at that time. I wanted to, wanted to hope and believe that everything would just go away in the week prior to the MRI, but I see the worst of the worst. Most physicians you meet are pessimists, I am no exception.  I was pretty much in a daze through the next week. Managed to celebrate Josh’s birthday with a smile, although it was definitely forced. I know I went to work, didn’t kill anyone and managed to make it to Friday the 14^th. I can’t tell you how many prayers I said for strength and peace for that week but I will be completely honest. I was angry. I know why something like this would happen to us. We love our children and would do anything for them.  Then I prayed that God would heal him, that everything would be fine when I went for them MRI. I tried to tell myself he isn’t going to give me something I can’t handle. I wasn’t sure I could handle something like this though.

The MRI was at 10:30am. We talked with Dr. Hulse, a pediatric radiologist who explained the procedure and what they would be looking for. He said that they would do 3 scans on each baby to evaluate everything they could while they had me in the scanner. He estimated it to take approximately 30 min. Anyone who has had an MRI knows how uncomfortable those MRI beds are. I must say, they are much more uncomfortable to someone with a gravid uterus with two babies compressing your major vessels taking blood back to your lungs. They did many more than 6 scans, I assumed it was because they were moving. As I was  on the table for almost an hour I assumed the worst.

I walked out and Dr. Hulse asked me if I wanted to go over the pictures with him. I of course did, who would give up the opportunity to discuss with the person who knows the most about these type of scans. He pulled up the first one of baby A and I knew it was bad. He scrolled through sagittal and axial cuts of the MRI and showed me all the aspects of what we were looking at. It definitely was not a bleed. I could tell that immediately and didn’t need him to explain that. It was bigger than on the ultrasound a week prior and had more involvement of the left side. It appeared to be a tumor. Massive and very highly aggressive to have grown this large in only a month. Looked like it originated from the third ventricle but he could not be certain. He said that the most likely tumor that appeared like this was a malignant teratoma. The other option he mentioned was a glioblastoma. Neither one was better than the other.

We had a meeting with the pediatric neurologist right after our MRI. She is a dear woman. Someone I greatly look up to and was glad she was the one we would be seeing. She walked into the room and knew we knew. Unfortunately she had nothing to offer us. She had sent a message to the pediatric neurosurgeons but with how everything looked no one thought that there would be a neonatal surgeon out there that would touch him. The tumor was too big, too aggressive. I left stunned, devastated and unsure of how to process this information.

We then went directly to a meeting with our MFM  doctor. He went over the process we would likely be going through over the next few weeks. Right now it would be a waiting game. Frequent ultrasounds to follow head size and make sure he was still functioning. If he were to develop hydrops or polyhydramios then he could put his sister at risk and we would be talking about urgent delivery. Right now he looked like he was still doing everything he needed to do. Baby girl looked great. MRI showed every part of her looked perfect and she was still growing well despite him having a big head.

Mark 9/14/12 as the new worst day of my life.

I still didn’t know how to process this information. I was completely devastated. Our little boy was just given a death sentence and I could do nothing about it. I am supposed to be the person that fixes these things, not the one that has to personally deal with them. I had several breakdowns, although I tried to keep them to myself as best as possible, as I still hadn’t figured out how to even approach this with Allison and Emma. I had a thousand things going through my mind. How long do we think they will stay in before we deliver? No idea, take it one week at a time. How do you contemplate losing a child before you have ever even met them? Still haven’t come up with an answer to this one. Do we need to start planning funeral services now? Still haven’t delved into that one… besides picking out some music I would like to use. Will I be able to hold him even though we know I will be having a c-section? We meet with neonatology next week but they apparently deal with this sort of situation frequently and we will have as much time as possible with him after delivery. One of my coping techniques I guess was to research the tumor he has. Incidence is approximately 0.3/1 million births. One of the most rare things you can see. Of the very few babies born with a malignant teratoma 97% pass away within 1 week of delivery. 30% of those are stillborn. The later they are diagnosed the better chance they have at survival but the survival rate is still only 3%. It is almost unheard of to find one as early as we found Owen’s. Typical diagnosis happens between 28-34 weeks. Hydrocephalus is inevitable as it is a 3^rd ventricle tumor and will most definitely block CSF flow. We have to hope his head doesn’t get too big too fast so we can give Olivia as much time as possible prior to delivery. I sort of stopped with research there. It was not comforting.

I still occasionally get angry about dealing with this, but am trying my best to at least stay optimistic for certain things. I pray he is born alive and I can spend at least a few minutes with him. I pray he stays healthy enough to keep his sister in long enough to where she has an uncomplicated NICU stay. I specifically pray several times a day for strength and peace. To know we were blessed with Owen for a reason and someday I will know why.

Right how his head is big… really big and it has made my uterus very irritable. I am basically on bed rest from here until delivery so I thought it would be a good time to start letting people know what we are experiencing.  Both Owen and Olivia are very active and are good at keeping me up at night. I feel blessed to feel them inside of me.

We have another appointment and ultrasound next week when we hit 27 weeks. Pray that everything continues to look stable at that time.

Cathy