I realized the other day that it has been quite a while since my last update. Honestly, I haven't had a lot to say, and there really hasn't been any developments to speak of, until last week.
Last Thursday, we met with the specialist who followed Kherrington during the pregnancy, to discuss the results of all the testing and the autopsy. I went into this meeting hoping for answers, but realizing that in cases of still birth, answers don't always come. Here is what she had to tell us:
- My blood work (they had taken 15 vials out blood and tested for everything; they called it a "tox-screen") came back O.K. I didn't have any infections, viruses, blood clotting disorders or diabetes that may have affected Kherrington. So that is a VERY good thing. That almost makes me believe that I didn't do anything wrong.
- The amniocentesis revealed that she did have Cystic Fibrosis. We knew this was a VERY likely possibility and I would have been surprised if the results showed that she didn't have CF. There were no other genetic or chromosomal issues discovered. So, this means that other than the CF, she was healthy as far as genetics and chromosomes go. Also, this tells us that there are no reasons to not have any further children since we have come to accept that we have a 25% chance that the next pregnancy will result in a baby with CF.
- The autopsy results are "preliminary", meaning they just reported what they could see when they opened her up. The "final" results could take another 6 months. When the doctor said this, she looked at us and said "I hope you're pregnant by then". The autopsy found that she had a "Volvulus" obstruction in her bowel. This means that the bowel tied itself off like a bow tie or a sausage link. Usually, this does not cause intra-uterine death, but the specialist told us that it could have caused a hemorrhage, or oxygen deprivation that may have caused her heart to stop beating. This was a bit of a surprise for us. We knew her bowels were blocked, but I was of the impression that they were blocked with meconium (poop), which in babies with CF is very hard and difficult to pass and could result in an obstruction. This was not the case. The volvulus is not necessarily caused by CF, and she made it seem like this was just an unfortunate coincidence.
- She reassured us that next time would be different. Next time, she will see me at 12 weeks gestation, and follow me at regular intervals until 30 weeks. At 30 weeks I will probably start seeing her every week. We asked her when it would be O.K to try again. We had heard that we should wait a year or two to allow my body to recover. She responded:
"No! Don't wait! You're body should be fully recovered now, and whenever you're ready, go ahead and try again. We suggest that you wait 2-3 cycles to allow for better dating of the pregnancy. But I will see you at 12 weeks, so waiting really won't affect the dating. Don't wait, you only get older, and age makes it harder and can bring other complications. Whenever you're ready go ahead, but don't wait."
What a relief it was to hear this! We know that we can't replace Kherrington. She is, and will always be, our first born. Other children will know that they have a big sister. But going into this meeting, I was really hoping that she wouldn't turn to me and say "don't have any more kids". I feel almost like I have a point to prove now. I carried Kherrington to 36 weeks + 5 days, and in my mind there is NO reason why I can't have another baby and actually have it survive.
She then went on to tell me that "I didn't do anything wrong". This immediately brought me to tears. It is hard to describe this to others, and I believe it is my right as her mother to blame myself. I have been trying to figure out what it is that I did wrong. I told the specialist, that I have often wondered if I didn't eat properly, or if it was all the exercise, or the stress from work, the organizing I did around the house, keeping a fire going, scooping cat litter (we have indoor cats and I used gloves and a mask), or that time I cleaned the bathroom. This list is never ending and I could go on and on. She said "No, none of that caused any of this."
The womb is supposed to be the safest place for a baby, but it is far from it. When a baby's heart stops after it is born, they can give it CPR and defibrillation to try to bring it back. When the heart stops in utero, nothing can be done. This has been the hardest thing for me to accept. I now look at myself as anything but safe. The fact that any baby can survive past conception is a miracle. At least I know that Kherrington wasn't filled full of tubes and had painful surgery, or suffered needlessly, to end up with the same result. Thankfully, she was never alone.
I met this past Monday with my physician for a checkup. When discussing future pregnancies, she said the same thing,"no need to wait". Then she sent me for blood work to have all of my "levels" checked. The prominent theme of "don't wait" is very reassuring, and terrifying at the same time. We'll see what the next few months bring. Neither one of us want to wait, but part of us feels like we should. For Kheri's sake. But, I would like to think she would like us to move on, and give her a brother or sister. I would like to think that she would want us to stop tormenting ourselves, and be happy.
