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My husband and I learned I was pregnant with our first child in early April this year after trying for only 4 months to conceive. We were so excited! There were a few issues in the beginning, but after seeing a heartbeat on early sonogram at about 7 weeks, we felt good and thought we were in the clear. We went for routine sono at 18.5 weeks and were told that everything looked great with the baby except for the fact that the OB didn’t see any fluid in the baby’s stomach. She did not sound worried however and told us that it was probably just timing. She recommended that we come back in 4 weeks for a repeat sono to follow up. At 22.5 wks we went back expecting to hear that everything was normal. She did see fluid in the stomach, but told us that the baby looked too small for his age. She said that she could not find anything structurally wrong to explain this, so she recommended we see a perinatologist. The next morning we went to the perinatologist for a sono and consult. That was when the bomb was dropped. The findings were: clenched hands, echogenic kidneys, no stomach, and something with the head that we couldn’t really understand (later we heard that in the report he described it as “lemon” shaped). He said that it could be one of 3 things: normal (although he made it clear he didn’t think that was the case), a chromosomal problem or a genetic problem. Neither my husband nor I have any family history to our knowledge of a genetic defect. The doctor recommended that we have an amniocentesis done to rule out a chromosomal problem. Not knowing what else to do, we decided to have it done right then and there. That weekend, we were devastated and confused. We found out the next week that the chromosomal analysis was normal. We also had an echocardiogram on the baby that week which was normal. The day of the echo, we saw the doctor that is the head of the practice that we were at. He did a little sono and almost contradicted most things the other doctor said. He said that the hands weren’t necessarily clenched – that some of the fingers seemed to be opening. He said that he did see the stomach. He said that the head was not lemon shaped, but maybe a little bit “boxy”. He was certainly more optimistic. He said at that point that the most important thing was to monitor the baby’s growth. The next week we went back for a repeat sono. The baby had grown 6 oz from 2 weeks prior which the doctor was very pleased with. His main concern at that point was that he said that the head was narrow from front to back (brachiocephalic). He therefore recommended that we go to Children’s National Medical Center (CNMC) for a MRI to more closely look at the baby’s brain. We had the MRI done the following week along with another sonogram. The pediatric radiologist that we met with there explained to us that the brain was in tact, but that it looked a little less mature than it should for the baby’s age (more like a 20/21 weeker than a 25.5 weeker). She said though that the brain can catch up and to hold on to that hope. There were also 2 small white areas in the brain that she wasn’t really sure what they were. She said they may just be neurons migrating out to develop or maybe inflammation. She was reassured though because they were symmetrical. She did express some concern that there may be something neuromuscular going on due to the hands and the fact that the stomach seemed a bit small. Also my amniotic fluid level was a little on the high side (which might mean that the baby is not swallowing effectively). As part of the appt at CNMC, we met with a genetics counselor and doctor. They took a thorough family history. They said they had some concerns, but could not offer us any potential diagnosis. They said they’d have to just wait until the baby came out to really know what is going on. The following week we had a follow up sono with the perinatologist. The sono revealed that the baby’s growth had slowed. The doctor was doom and gloom at this visit (this was the third doctor we had seen at that practice). He said that due to the severe growth restriction of the baby and the other abnormalities that have been picked up, he was very concerned. There also seemed to be some increased resistance to blood flow to the baby. He asked us how aggressive we want to be on behalf of the baby. If we did nothing, the baby could die in utero. He projected that if we deliver the baby early (due to him not thriving), that he would have a 5 % chance of survival, and if he survives he would probably be severely mentally handicapped requiring around-the-clock care. Upset again, we decided to make an appointment with a different perinatologist group for a second opinion. Last Wednesday (at 27.5 wks) we went to INOVA Fairfax Hospital for the second opinion. After having yet another sono, the doctor we met with said that the baby has severe IUGR (intra-uterine growth restriction) and that the baby has other problems that are major. In addition to the problems with the hands, the echogenic kidneys and the brachiocephaly, she said that the eyes were measuring too close together. This finding she says is linked to syndromes associated with severe mental retardation. She said our options were to go home and let nature take its course (knowing that the baby may die in utero) or, if we want to give the baby a chance, to be admitted to the hospital for bedrest and daily monitoring of the baby. Since we feel as though the doctors cannot be 100% sure that the outcome will be horrible, we are following our hearts and erring on the side of life to give this baby a chance. It is too hard to give up on a baby that you created out of love and has been fighting for his life for 28 weeks. She made it clear that we need to understand that the baby will most likely have major problems and to be prepared to deal with the worst. I don’t know how one ever prepares for something like this. Since being in the hospital, there hasn’t been much more clarity. The NICU doctor talked to me yesterday and explained that he is concerned about the baby (as everyone says they are) due to the multiple anomalies, but especially because part of the brain (he said the “small brain”) seems to be underdeveloped. As he was talking, I kept thinking “did I hear this before? Is this something new? Where are you getting this from?” I made sure he saw my report from CNMC. I just feel that the more I hear, the more confused I am. He discussed resuscitation and asked me to clarify that we do want full resuscitation of the baby upon birth if needed. After the baby is born, we will take it one decision at a time in terms of continuing resuscitation or withdrawing care if this is even brought up. These are decisions that I never dreamed of having to make for our baby. We realize though that it is important to take it one day at a time and not get too far ahead of ourselves. A genetics doctor did come in this morning to meet with my husband and me. She spend a lot of time with us and did a thorough review of my chart. The outcome was that she could not fit this situation into any particular syndrome at this point. She says that we may never know what exactly caused this. Once the baby is born, she will take a look at things more closely. She recommended a micro-array test on the baby once he’s born. She mentioned that in the chart, she saw the head referred to as “clover” shaped on the last sono. I believe I’ve heard this once, but cannot remember from whom. So, we are now left to wait. It is hard enough to deal with this situation, but even more difficult that I cannot be home. My husband spends as much time here as he can, but he cannot be here 24/7 as that is not reality. We pray that the baby stays in me as long as possible as there may be less difficult decisions to make in that case. We are still hopeful that things may not be as bad as they are saying they will be, but are not naïve in thinking that everything will be great. This is like a horrible nightmare that we can’t wake up from. We’ve gone through dark moments through this and know that there will be many more. We are pulling through together as a united force. We also have such wonderful love and support from family and friends. I will be updating the blog frequently with any developments.