Thursday, January 16, 2014


One of the first things you have to do when you get  a fatal diagnosis for your baby is decide what you want to do.  I was lucky that I had doctors that told me about all my options, not everyone is. There are a few options for you to choose from, all of which seem scary and hard in different ways. It is not an easy choice at all, you not only have to think about yourself, but of the baby and if you are married or have living kids they must be taken into consideration as well.

Carrying to term used to be the most controversial one but in the past few years it is becoming more of the norm as more doctors are letting women know it is an option. Now of course this is more of an option for those people who will not have any serious medical issues with continuing the pregnancy. On that note I just want to say that if your doctor tells you it wouldn't be safe for you to continue on with the pregnancy or that there is a chance of serious side effects, or that your baby is suffering from it PLEASE do so research on that before you decide. I have heard stories of woman who are pregnant with a baby with anencephaly that had doctors tell them it wasn't safe when in fact the most serious side effect is the extra fluid which doesn't happen in every anencephalic pregnancy Many have also been told the baby is suffering which is also not true in most cases.

There is also the option of early induction. They will induce the labor and you will deliver the baby like normal. Both this option and carrying to term are the only choices for a chance for your baby being born alive, though in some cases like with anencephaly that is only about a 50% chance.

For some people insurance companies will not cover an early induction because it isn't medically necessary so they decide to go another route. I do not know the medical term for this so I will just describe it. It is where you take a pill or get an injection that stops the babies heart beat then the insurance will cover the early induction.

For carrying to term or an early induction if your baby is born alive after 20 weeks, the weeks may vary by state from what I have heard, you will get a birth certificate. If your baby doesn't survive the pregnancy, birth or your decide to go the 3rd way then you will get a stillbirth certificate. I know this may sound weird but those certificates mean a lot to the babyloss community. It reaffirms that our babies were here!

The last option is abortion. In cases like these even people who swore they would never get an abortion choose to go that route. There are laws in each state though that say how far along you can be to get one so you have to take that into consideration too. Usually most states allow for later abortions with a fatal diagnosis for the baby.

No matter what choice you make it will be hard. For carry to term you are constantly having to explain to people, if you don't explain while you are pregnant then you have to explain why you don't have the baby home with you. For some people this can be hard, especially at first, for others it can be used as a way to educate people on the defect or gives you a chance to talk about your baby which can be a comfort. If you are far enough along then you will have to go through some of that too no matter what choice you make. There are so many things to take into consideration. Do you want to hold your baby, do you want pictures to remember them by and to share with others, do you want the chance for them to be born alive and get some time with them,  there are many questions you have to as yourself.

If your life isn't in immediate danger then take some time to think about it, to pray about it, talk with your spouse or significant other about it. Until you feel sure about a choice don't make one.The fact that you are unsure means it might not be the right choice for you. You have to live with the choice for the rest of your life, you need to be comfortable with it. Four years later there are still days I feel guilty for my choice of inducing at 33 weeks because of extra fluid causing my asthma to act up. Most days I am okay with it but wish I had taken a little more time to think about it. And again please do research about it because some doctors are still back in the dark ages when it comes to some birth defects. You don't want to abort then come to find out the doctor lied or mislead you and you actually had other options. I know women in those shoes, they wish they had had google and all the other sites out there that technology gives now to research easier on our own. Most of them say they probably would have made a different choice.

No matter the choice you make don't let anyone make you feel bad for picking that. You have to do what is best for you and your family. No matter the choice we all grieve, we all have the heartache. We all end up at home at some point with a broken heart and empty arms.

Friday, January 10, 2014

What Medical Professionals Need To Know

So over the years I have mentioned how great my doctors and nurses were when I was pregnant, during the delivery and after. I have also mentioned that I hear horror stories on a daily basis about what others have gone through with their medical staff. So I want to take a moment to sit down and write down what I have seen and heard over the years that has helped families when it comes to the medical professionals we deal with during this time.

First I am going to start off with what mine did right.

1. Have and show compassion. I know most doctors are trained to think of these babies as a fetus but to us they are our blessings, our dreams come true, our life. They aren't just a fetus to us. We have already dreamed in our head the years ahead, the memories we will make. They have already filled a spot in our heart that no one can replace, we have already pictured what they will look like and how they will act. So think about that and show compassion when giving us the diagnosis or at a regular appointment. Look us in the eye, show us you care. I still to this day remember my doctor doing little things like putting his hand on mine, looking in my eyes and quietly asking us how we are doing, and actually meaning it, actually wanting an answer. I remember him waking me up the morning after her birth and the first thing I saw was his face filled with compassion and understanding. He gave me a soft smile, again placed his hand on my arm and and just nodded. It only takes a few seconds to show you care and it can make all the difference in the world. I got blessed in the fact that almost all of my doctors and nurses were like this with us.

2. Give ALL the options to the family and don't push your opinions of what they should do on them. Give them as much times as needed to figure out what they want to do. You can give them the facts, the good and bad about each options but don't scare them into not choosing one or the other. My specialist did tell me what he thought was best but he didn't pressure me into it and he didn't try to scare me into it either. When we chose not to do what he thought was best he said he understood it is our choice and said he would do whatever he could to help us.

3. Ask us what we want, what we need. I was so scared walking into labor and delivery the day of the induction, we were late because of that. But one of the first things the nurse asked me is what she could do for us. I told her don't treat us any different than a normal patient. Now of course in some ways she did, thankfully, but when it came to all the regular stuff she didn't. She talked and joked with us and helped us celebrate the birth of our baby like it was just a normal day in L&D. I seriously think she was an angel in disguise, but she denied it, lol.

4. Give us ultrasound pictures. I can't believe how many families have said they never received the ultrasound pictures of their baby. Just because our baby is going to die doesn't mean we love them any less, doesn't mean we don't want to keep those pictures to look back on later, doesn't mean we don't want to share them with our friends and family. In fact give them more than what you would give another patient. We don't get years of pictures to look back on like everyone else does.

5. Take pictures. We didn't have the chance to have Now I Lay Me Down To Sleep at the delivery so the nurses took pictures for us, they offered we didn't even have to ask. That way we got the time she was with us to enjoy with her, holding her, loving on her, just enjoying her presence instead of worrying about taking pictures. While I would have loved to have professional pictures done these are just as special, they really thought about what kind of pictures we would have liked to have. They are a reminder not only of our moments with Isabella but also of our thoughtful caring nurses that day. While we didn't get to leave the hospital with our baby we did get to leave a big stack of pictures of our beautiful baby girl.

6. Give us memento's. We brought in the stuff to make molds of Isabella's hands, the nurses were kind enough to do it for us. But unexpectedly they also made a little bracelet with beads that made out her name. They had a memory box that I am guessing people donated, they filled it with all her arm bands, a lock of her hair, they took prints of her hands and feet and put them on paper dollies for us. They put the blanket she was using and the clothes she wore in there. I love pulling that box out and looking at all her stuff.

Now there are a few things that I wish had been done. This is mostly stuff I thought of or saw others mention in the years after Isabella.

7. Do not make us wait in the same room with all the other pregnant woman and babies at our appointments. I spent every appointment in that waiting room crying waiting to get called back. It's hard being around pregnant women and babies. Hearing them complain about heartburn and other mundane things just makes up want to reach and slap them, to scream. How we only wish the normal pregnancy annoyances was the only thing wrong with our pregnancy. Seeing those babies with their moms at their 6 week check up is just a horrible reminder that we will not have our baby with us at that appointment. We don't need a separate waiting area to ourselves. Give us the option to sit in an empty patient room or anywhere you have available that isn't the waiting room.

8. When we are coming in for regular appointments let the nurses know the situation before we are called back. When the emotions are still so raw it isn't fun having to explain over and over again, especially when you are even more emotional than normal being stuck in the waiting room with all those pregnant woman and babies.

9. Find out if there is a local prenatal hospice or infant loss support group, if there is give us the information for it. I never even knew there was a such thing as a prenatal hospice until long after Isabella had passed. I also didn't know about the infant loss support group that met right in the hospital where I had her. It would have been nice to have had the chance to take advantage of these services, especially since we went through it all alone having no friends or family in the area. We are already so lost with getting the diagnosis and not thinking straight that we might not even think to look up those type of things while.

10. Make sure you know the process with the funeral home. Even though I knew it was just a body it still broke my heart that my Isabella was stuck, I don't know where since the hospital didn't have a morgue, for 3 days after we left because of issues with the hospital and funeral home, partly had to do with that the nurses didn't know what to do, they thought we would have it all set up. But the funeral home wouldn't let us set anything up until after she passed.

What it boils down to is treat us and our babies with the dignity and respect we deserve. Being told your baby has a fatal birth defect is harder than you will ever know, don't make the situation any harder on us than it has be. Show love and compassion and if you aren't able to do that recommend a doctor that can.

Before I go I just want to give a heartfelt thank you to the staff at Topeka Maternal Fetal Medicine and my nurse practitioner, doctor and the midwife and nurses that worked L&D at Irwin Army Community Hospital when we were there. They all made what was a very heartbreaking time for us a little bit easier.