I should start by saying that this was my second pregnancy. My first pregnancy ended badly. I was pregnant with a little boy we would name Thomas. Thomas was diagnosed with OSB (open spina bifida) and several other things that are commonly associated with OSB. I was 21 and lived 3 states away from any family. I was devastated with the diagnosis and was from what I can clearly see now to be pressured into terminating the pregnancy at 21 weeks 3 days. I have many many regrets for this.
Moving ahead to March 2009…..5 weeks pregnant with my second child. I was ecstatic! I was scared, worried, sick but happy at the same time. Nobody is ever given a bad card twice in a row, right? Wrong! Very very wrong, but, we would not know this until mid June. We were of course sent to a specialist early in the pregnancy obviously because of the previous pregnancy. We were not concerned. The first scan at 13 weeks went fabulous. Healthy baby and aside from some incredibly sever morning sickness that I was prescribed Zofran for, a very healthy momma. We did the normal blood testing for AFP and all the syndromes, all of which came back normal. We were so relieved to know a healthy baby would be born November 25th 2009. A few weeks pass and we had our second scan around 18 weeks to do a spine check and to find the sex of the baby (again this was at the specialist and we were not concerned). The nurse was doing the scan for quite some time without saying anything. I asked her if the spine looked good and she said it looked wonderful, however, our baby may have a heart condition. What? Heart condition? I was furious. She shut the machine off and said she would get the doctor. I told her “NO” “Turn that back on and tell me if this baby is a boy or girl! I want good news before I get anything bad” He was a boy. The doctor came in and looked at the baby and said your baby has HYDROPS. What is Hydrops? Why would my son have something I have never heard of? How can this be? I had many many questions. First of which: “Is this treatable” The answer we were given was “No”. We were told our son would not survive more than a few more weeks if he’s really lucky. We were urged to terminate. and my answer to that stupid statement was “No, I want another doctor”. This doctor also told us that the baby may have something wrong with his heart but they weren’t going to worry about it since he wouldn’t live anyways. Needless to say I change doctors immediately. The next specialist again urged termination. I stuck to my guns and refused. I had done much research online about treatments for this horrific condition and possible causes all of which offered very little hope.
The actual truth was only %1 of hydrops babies made it to the delivery room. In my research I discovered the University of California San Francisco (UCSF) teaching hospital. They have dealt with many Hydrops cases and if we had a fighting chance this is where we wanted to be. Luckily UCSF was only a two hour drive from my home in Sacramento. I went back to my specialist and forced them to refer me to UCSF. I was seen there the same week. By now we are in the end of June 2009. The fabulous Dr. Rand at UCSF had all of my scans redone and had them review by a medical panel to get several expert opinions on my case. Not one of those Doctors thought that I had to terminate. Would it be easier in the long run for the baby…sure it would, but life isn’t always about the easiest road taken. The baby showed at this point to be in fairly good health. He had skin edema, fluid around only one lung (however it was fairly sever) and a small almost minuscule amount in his abdomen. This was wonderful news. He was growing at a normal rate with the exception of the one lung and a pediatric cardiologist said his heart was at %100! We visited UCSF and the regular specialist very week, alternating weeks. At each appointment a new scan was done. I was at this point 20 weeks. We continued with the scans until 26 weeks when at the regular specialist the scan had changed from stable to much more concerning. While he had zero change for 6 weeks, at this appointment the teeny tiny amount of fluid in his abdomen was at this point very noticeable, even for me to see. And I was starting to get sick as well. At 26 weeks I was measured to be the size of a 42 week gestation. This was not good. The next week I went and saw Dr Rand again and I had my scan done, he didn’t even call me back to his office, he didn’t need to. The he instructed the woman in the office to get me in a wheel chair immediately and across the street to the hospital where I would be admitted to L&D. I had no idea what was happening, but apparently they felt I and the baby were too sick to leave. The date is Thursday August 27th 2009…..hospital admission day. I was to stay in the hospital under close watch until they felt like I would be stable at home. I was severely swollen at this point I couldn’t even walk. Friday came and went, nothing serious happened except the NICU team came to talk to me just in case and I met my first Hydrops “buddy”. This woman had a son in the NICU currently who was battling Hydrops for the last two weeks. On Saturday the mood changed. While my son previously had a very healthy and stable heart rate up until now, he was showing signs of distress. His heart rate was very erratic, it would go from 125 down to 50 and back up to 130 and back down to 65. They decided at that point to take me off the heart monitor for my sanity. and said I could go home on Sunday. They were nuts if they thought I was leaving that hospital now! I begged, cried, screamed and pleaded with them to just do a c-section and help him. I was watching him die and they wouldn’t help. They said it wouldn’t do him any good.. I blame them to this day for what happens next. Sunday…..morning rounds start. Morning rounds mean it’s time to check for a heartbeat. I just lay there so still because I know that they don’t even need to do this. I haven’t felt my baby move this the day prior. The nurse pretended like nothing was wrong and said “oh the Doppler must be out of batteries” so of course in come the US machine ……and a doctor. As everyone knows, a doctor doesn’t come until there is news to give, good or bad. In this case bad. I beat her to it though. She had the wand on my stomach and before she could tell me there was no heartbeat I said “I told you, you should have done the c-section. When are you inducing me so I CAN GET THE HELL OUT OF HERE?!” She couldn’t say much except she was sorry. They induced me immediately. On Monday August 31st 2009 at 11:16 am Maxwell Glen was born still. He was 6lbs 4oz, so very large for his gestational age of 27 weeks 2 days. He was so swollen. I held my son for hours. I dressed him and had his pictures taken. I eventually had to make them take him away. I knew if they didn’t I wasn’t going to be able to let go. After that it was a blur…..cremation arrangements, visitors, phone calls. I hardly remember any of it. The saddest part was, when I went back to the regular doctors for my 6 week post partum check up and to obviously get an anti depressant for PPD, the doctor basically said I told you so. No compassion. It hurts, my heart hurts. I have two sons who will never experience the joy of life. In October of 2010 due to an unexpected and trust me a very very unplanned pregnancy, I was able to give birth to and adorable 7 lbs 2 oz baby boy. He is currently a very healthy, very active 9 month old and while I wished I had had more time to grieve the loss of Maxwell before a 3rd pregnancy, I wouldn’t trade it for the world. In case everyone was wondering…..there was no cause for the hydrops. An amnio showed normal chromosomes. He was just one of those tiny few to make an impact of the lives of many without ever giving us a reason as to why he was so sick. Also I would like to say that while I was and am still, so angry with the doctors for not doing the c-section, I know in my heart of hearts that we wouldn’t not have made it as far as we did without the help of Dr. Rand and his Medical team at UCSF.
