What We Are Dealing With

So yesterday, (on a much smaller scale) this is what was basically seen. That blue/white space is where a pocket of fluid has formed. Because there was only one pleural effusion seen on the ultrasound, it rules out Hydrops Fetalis for this week. The reason I will go back every week is to monitor this pocket of fluid. Our doctor ideally would love for it to grow smaller and/or  for no other pocket to appear anywhere else in the body.  To be given a diagnosis of Hydrops Fetalis, there would need to be two or more pockets elsewhere in the body. The pockets typically are seen around the heart, the neck, the stomach, under the skin, and the baby can actually have pounds of edema from Hydrops. Hydrops terrifies me. Some of the pictures I saw are terrifying, and the statistics equally terrify me. But I have also read success stories and viewed pictures of children doing well. My biggest hope is that this pleural effusion either goes away or remains a single pleural effusion. Here is some info about Hydrops:

If there is a family history of any of these factors, there is a higher risk for Hydrops.

• Jaundice in other family members or in previous child
• Family history of twinning (specifically, monozygotic)
• Family history of genetic disorders, chromosomal abnormalities, or metabolic diseases
• Congenital malformation in previous child
• Previous fetal death
• Hydramnios in earlier pregnancies
• Prior hydrops fetalis
• Previous fetomaternal transfusion
• Congenital heart disease in previous child

We have five of these factors. Here is the link for the info on Hydrops. But for those of you who want the basics, here are the facts.

How does Hydrops Fetalis affect my baby?

"Hydrops fetalis is a symptom of a problem with the baby. An infant/fetus with hydrops is severely compromised.  The earlier this diagnosis is seen the worse the prognosis.  Some of these babies may even die before they are born. When the diagnosis of immune hydrops is made, it needs to be treated as an emergency and immediate arrangements are made for treatment. The treatment will be partly dependent on the gestational age at which the diagnosis was made. 

There is a 60 to 90% fetal mortality associated with non-immune hydrops. This mortality rate is dependent on the underlying cause. Many of the underlying congenital anomalies (birth defects) have an extremely high mortality rate in and of themselves. Generally, the earlier in gestation that fetal hydrops is seen, the poorer the prognosis.

What is my baby's long-term prognosis?

Long-term prognosis is guarded. These babies are critically ill even if they do survive to birth. Of the fetuses diagnosed prenatally, only about 20 percent survive to delivery. Of this number, approximately half will survive the neonatal period. Long-term survival for those that make it through the newborn period is based on the underlying cause of the hydrops. The data currently shows an optimistic outlook for those babies who do survive.

 Because this little guy (whose potential names right now are Colton or Oliver) also has a coarctation, we are very concerned because not only could he be dealing with Hydrops, he will have to have his little heart repaired. Unless the fluid goes away, I will have a c-section, and they will immediately intubate this baby. You can see why we feel so stressed at even the possibility of Hydrops. I am also at an increased risk for my health if this develops into Hydrops. 

"Hydrops may be complicated by preeclampsia and/or mirror syndrome (involves pregnancy-induced hypertension or high blood pressure with renal/kidney involvement) in up to 50 percent of the cases of non-immune hydrops. With mirror syndrome, symptoms in the mother mirror the symptoms in the fetus and can be life-threatening for her. Mirror syndrome can happen at any time during the pregnancy and can persist even after the baby is born.  The only treatment for mirror syndrome is immediate delivery of the baby and/or when possible, treatment of the fetus to resolve the hydrops. Preterm labor can be a complication of polyhydramnios (as well as preeclampsia)."

If this remains the pleural effusion, than we are again questioning as to why the pleural effusion is happening. Yesterday, this baby's heart function looked great. But there has to be a reason the pocket of fluid is there. We than bring in the question of whether he is in heart failure. And if it is heart failure, we are looking to when we can safely repair the problem. I wish I lived back east. I would be going up to Boston, where they are doing in-utero surgeries. We also have to watch the development of the left lung, to ensure it is growing during this critical period. The doctor talked to us about removing the fluid off, whether by a one time needle aspiration into the baby's lung while inside of me and removing it that way, or possibly placing a shunt to drain the fluid. 

So those are the basics for now. As you can see, so many unknowns. It is frustrating to feel so out of control. Our families will be having a fast this Sunday for our little boy. Anyone who can or would like to join in that effort, we would be very grateful to. It is very difficult to hold onto faith, when you feel so crushed and broken. I am having a hard time keeping myself together. I have cried a lot, and am going through so many emotions. My biggest hope is to not have to attend another funeral for one of my children. So if I seem sort of testy, or short, or just seem like I do not have a handle on things, it is because I do not. Mike called me this morning to ask how I am doing. I told him the dog had been taken out to the bathroom, Collin had been changed and was in clothes, and I had gotten dressed. And I told him that would probably be it for the day, and it was. So thank-you for the kind words and support. We are hanging on by threads for now.