Report about the birth and life of babies with anencephaly

It really is difficult to find a lot of statistics on anencephaly. The following is the most reliable report I've been able to find.


Report about the birth and life of babies with anencephaly

by Monika Jaquier

When parents get the diagnosis of anencephaly for their unborn baby, they often get only a minimum of information about what is in store for them. Doctors generally cannot tell them much about how long the baby could be expected to live, as most physicians have seen only very few cases in their practice. There exists almost no published information regarding the spontaneous outcome of a pregnancy with a baby affected by anencephaly.

But parents have questions. They need to know as much as possible about their baby’s condition.

Is there a risk that the baby will die during the pregnancy, in his mother’s womb?
What are the chances that the baby will survive birth?
How long do babies with anencephaly survive after birth?
Are there any factors that can give the baby a better chance for surviving the birth?

To answer those questions and to help families preparing for their baby’s birth, questionnaires were sent to families who opted not to terminate the pregnancy. These families met through the website http://www.anencephalie-info.org .

Data regarding 303 babies was collected. All babies were diagnosed with anencephaly and were carried to term or until spontaneous premature birth.

The information gathered is surprising. The results may impart courage to affected families and allow obstetricians to offer better advice after the diagnosis. There is no doubt that anencephaly is always fatal, but the chances to be able to hold your baby alive in your arms are good.

Findings:

The pregnancy:
Almost 40% of the babies were born prematurely (before 37 weeks of gestation) and 4% beyond term (after completing 42 weeks of gestation). Among those who were born at term, 2/3 of the mothers had the birth induced or had a planned c-section.

In 30% of the cases, too much amniotic fluid (polyhydramnios) did build up. This condition doubles the risk of a premature birth. Among those who had polyhydramnios, almost 60% of the babies were born before 37 weeks, against 30% among the unaffected pregnancies.

Other pregnancy complications were rarely recorded. Many mothers with previous pregnancies noted no subjective difference regarding general well-being between their pregnancies. Often fetal movements with the affected baby were more intensive than with a healthy baby.

The birth:
In almost all cases, a vaginal delivery was possible without problems. Contrary to the belief that delivery may be prolonged due to the lack of cranium and smaller head, mothers with previous pregnancies noted no subjective difference regarding the length and intensity of labor. Of those who chose a vaginal birth, 42% had a spontaneous delivery.

Several mothers asked for a planned Caesarean section (c-section) with the aim of avoiding stillbirth. Another indication was a pregnancy with multiples, where everything was done to reduce the risk for the healthy twin / triplets.

The baby's life up to and after birth:
Contrary to common belief, only a small number of affected babies died in utero.

Here are the statistics:

7% died in utero
18% died during birth
26% lived between 1 and 60 minutes
27% lived between 1 and 24 hours
17% lived between 1 and 5 days
5% lived 6 or more days

Thus, of babies conceived with anencephaly, 75% survived the birth. Nevertheless, there were significant differences in survival rates as related to different birth methods.

In case of a planned c-section, only 4% died during birth (all those babies had additional malformations which increase mortality). Not only did more babies survive the birth, but they also lived longer. Of affected babies born by c-section, 53% died within 24 hours, 30% lived up to 5 days, and 13% lived longer than 6 days.

In case of vaginal birth, the risk of stillbirth following artificial rupture of the membranes is twice as high as if no intervention is done. When the amniotic bag was ruptured by the obstetrician or midwife, 37% of the babies died during birth against 18% when water broke naturally.

Pregnant women should draw their obstetrician’s attention to this fact in order to increase the chance of a live-birth.

The length of pregnancy is decisive as well. There is no significant difference between the rate of live-births of babies born before 37 weeks of gestation or thereafter. But premature babies have a lower life expectancy, as only 7% live longer than 24 hours as opposed to 32% of the babies born after 37 weeks.

Further results:
There is a female preponderance between babies with anencephaly. The ratio of female to male was of 3 to 2.

For babies born at 40 weeks, the average weight is 2740grams (6.02 pounds).

Additional malformations were present in 9% of the babies. This may be an underestimate as it refers only to malformations seen at the ultrasound or after the baby’s birth such as Myelomeningocele, omphalocele, cleft lip, cleft palate, heart defects, malformed digits, and so on.

A positive family history for neural tube defects (i.e. anencephaly, spina bifida or myelomeningocele, closed spinal dysraphisms) was reported in 5% of the families.

Of the 9 mothers who had a homebirth, there were no complications and all the babies survived the birth.

The baby with anencephaly was one of a multiple pregnancy in 41 cases. Of these, 37 mothers were pregnant with twins and 4 with triplets.

Among all those families who opted for continuing the pregnancy rather than having an elective termination, not one family regretted their earlier decision to carry to term. Many wrote how important it has been for them to see and touch their baby, stillborn or live born, to give him or her a place in their family, and to conduct a burial.

I’m very grateful to the parents who have generously provided information; without their support, this report could not have been produced.

March 7, 2006

Correspondance to: Monika Jaquier
Le Vernay
1677 Prez-vers-Siviriez
Switzerland
webmaster@anencephalie-info.org

Read also: Jaquier M, Klein A, Boltshauser E., Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly, BJOG 2006; 113:951-953

Emma's Bucket List

Since Emma most likely only has 3 months max left on this Earth (whether in utero or alive), I thought it'd be nice to make a bucket list for her - things she needs to try out. Most of these things will need to be via me since she's inside of me. I'm asking for your help in suggestions. Here are a few of the ideas/suggestions we've had thus far:

• go sledding
• taste chocolate (after she's born)
• smell the different fragrances at a store like Bath and Body Works

I should also add that more than anything, I want to do this so that we're purposely creating memories with Emma while we have the chance.

So what would you add to Emma's bucket list?

We're Going on a Bear Hunt

We're Going on a Bear Hunt

Michael Rosen Helen Oxenbury

We're going on a bear hunt.

We're going to catch a big one.

What a beautiful day!

We're not scared.

Uh-uh! Grass!

Long wavy grass.

We can't go over it.

We can't go under it.

Oh no!

We've got to go through it!

Swishy swashy!

Swishy swashy!

Swishy swashy!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A river!
A deep cold river.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Splash splosh!

Splash splosh!

Splash splosh!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! Mud!
Thick oozy mud.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Squelch squerch!

Squelch squerch!

Squelch squerch!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A forest!
A big dark forest.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Stumble trip!

Stumble trip!

Stumble trip!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A snowstorm!
A swirling whirling snowstorm.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Hoooo woooo!

Hoooo woooo!

Hoooo woooo!

We're going on a bear hunt.
We're going to catch a big one.
What a beautiful day!
We're not scared.

Uh-uh! A cave!
A narrow gloomy cave.
We can't go over it.
We can't go under it.

Oh no!
We've got to go through it!

Tiptoe!

Tiptoe!

Tiptoe!

WHAT'S THAT?

One shiny wet nose!

Two big furry ears!

Two big goggly eyes!

IT'S A BEAR!!!!

Quick! Back through the cave! Tiptoe! Tiptoe! Tiptoe!

Back through the snowstorm! Hoooo woooo! Hoooo woooo!

Back through the forest! Stumble trip! Stumble trip! Stumble trip!

Back through the mud! Squelch squerch! Squelch squerch!

Back through the river! Splash splosh! Splash splosh! Splash splosh!

Back through the grass! Swishy swashy! Swishy swashy!

Get to our front door.

Open the door.

Up the stairs.

Oh no!

We forgot to shut the door.

Back downstairs.

Shut the door.

Back upstairs.

Into the bedroom.

Into bed.

Under the covers.

We're not going on a bear hunt again.

I don't think I would have given this book much thought if you handed it to me a couple of months ago. However, when a friend gives it to you after hearing of your poor prenatal diagnosis because she was given this when she too was given a poor prenatal diagnosis, and she gives it to you with the intent that it might comfort and uplift you a little, I gave it much more thought.

Life is hard. There are a lot of things along the way that we have to go through. And even after all of that, the outcome may not be what you expected or hoped for.

I pray with all of my heart that Emma will be born alive. Yet I don't know if she will be or not. However, I know that my Lord and Savior will be there for me whatever the outcome is.

The Scriptures

A few days after we found out Emma's diagnosis, I got in touch with another LDS family that had had a baby about six months ago with the same diagnosis. I didn't really know what to say to them, but they were great in responding with love and support. They suggested a lot of things that were helpful to them. They also suggested a particular scripture. This scripture comes from the Book of Mormon.

Alma 7:11-12
And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.
And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities.

I love how when I read these verses they have the power to speak truth to my soul. However, I found it interesting that I was actually more drawn to another verse in the same chapter. Verse 8 reads,

...for behold, the Spirit hath not said unto me that this should be the case. Now as to this thing I do not know; but this much I do know, that the Lord God hath power to do all things which are according to his word.

Tim and I both received blessings the day after we first found out about Emma. While I wasn't expecting it, I was really hoping that the Lord's will concerning the final outcome of everything would be revealed in one of our blessings. However, it wasn't. As I've continued to pray and study, it's been confirmed to me several times that I am not to know the will of the Lord right now. I am to keep on moving forward with faith and when the time is right, the Lord will reveal his will to us (which may not be until it has actually happened). While this is hard, both Tim and I are willing to put our trust and faith in the Lord. We know that we need to just take this journey one day at a time.

Emma's Movements

I didn't feel Emma move for the first time until a few days before my first ultrasound (at 20 weeks). That was much later than when I felt my other children first move. And even then, I was lucky if I felt Emma more than once a day.

After finding out Emma's diagnosis, it made sense to us why she wasn't moving that much - she didn't have a brain. But as I've been reading online and talking to others, it seems that almost everyone says that their anencephalic babies have moved more intensely than their other babies. Already a little more paranoid than normal, this information did not help.

So last Friday I posted a message to that Yahoo support group that I joined asking if anyone else was in the same situation as me, where their babies did not move as much or as intensely as their other children. I was so grateful that people responded. Those that responded all said that it came later on than their other pregnancies. Most of them didn't start feeling anything until about 22 weeks, and the the intense feelings didn't come until at least 25 weeks along.

I read the responses on Saturday morning, and then surprisingly, I felt Emma the most I've ever felt her that day. I probably felt her at least 10 times, with several of them being consecutive. I'm 23 weeks along, so hopefully I'll continue to feel her more. And the reason I'm so paranoid about it? Because I want to be able to tell if she's died inside of me, but if she's only moving once a day, it's a lot harder to tell.

Empathy Etiquette

I don't know if my words will all make sense or portray what I'm really wanting to say and express, but I'm going to give it a try.

After the initial grief and shock of Emma's diagnosis wore off, I began to try and think more logically about things. The question arose, why me? Fortunately, it wasn't an angry why me, it was more of "what am I supposed to learn from this" why me.

There were some obvious answers that came right away, and other answers came within a day or two. However, there was one answer that I did not see right away. I don't even know if Heavenly Father meant for me to learn this either, but it's something that is becoming very apparent. The best way I can put it is empathy etiquette.

I have had numerous people share with me their sweet stories of loss, sorrow, grief, and trials. These stories have helped me in so many ways. More than anything though, I have felt empathy towards and have felt empathy from all of these dear people. My biggest problem, however, has been showing and receiving that empathy.

I don't think there's one right way to show and receive empathy. But I've been practicing my empathy etiquette skills and I'm so grateful for that. While I still never know quite what to say or how to say it, I'm learning more and more about how to express my true love, appreciation, and empathy towards others.

Yet sometimes, I wish there was more I could do or say to let people know how truly grateful I am for them. I am so amazed at the love and support of those around us. I know this doesn't do it justice, but thank you to everyone. You are making this journey so much easier.

Angel Watch

Angel Watch is different than the Angel Garden. Angel Watch is a program run in Utah by IHC that is a grievance support of sorts. We met with them earlier this week. We met with Carolyn, who seems to be in charge of the program, and then Heather, the grievance counselor for the hospital I'm going to deliver at, and Marilyn, a nurse at the hospital I'm going to deliver at.

At first I was a little hesitant that they would come and say, "what can we do for you?" and I'd say, "I don't know." And that would be that. But I liked it much more than I thought.

We first did introductions, with Tim's and my introductions being a little more in depth than theirs were. Then they asked us about any traumatic events in our lifetimes. At first I felt dumb saying this, but I told them that my dad almost died. After I explained to them about him being in and out of the hospital several times and getting phone calls a couple of different times telling my mom to rush to the hospital because he was dying, they understood a bit more what I meant and I didn't feel so dumb about it. But other than that, I really haven't had much.

After we talked about our past experiences, we talked about our greatest fears and our greatest hopes in regards to Emma's situation. If he wants to, I'll let Tim share his thoughts. But my greatest fear is not just that Emma will be stillborn, but more that she won't be recognized as much as part of our family if she is stillborn. I'm already so attached and so in love with her that I don't think I could handle people just passing her off as a stillborn. So on the flip side, my greatest hope is that she'll be born alive. (I should add in that Heather has the same doctor as me and she said that he is one of, if not the best in the area for high-risk pregnancies).

Our time with them was cut a little short because Tim had to get back to school, but it was good and we set up another time to meet with them. They also left us with some things, one of which is a guide to making our birth plan. I never made one with either one of my boys because I didn't feel a need to do so. I didn't feel strongly that something had to be this way or else and I trusted my doctors and nurses enough to help me make decisions if they were to arise. With Emma, however, I do intend to make a birth plan. Because it is such a high-risk situation, I want everyone to be on the same page as Tim and I (which should be on the same page as our Father in Heaven).

I was glad we met with them and I would recommend them to anyone in Utah.

Pregnancy and Infant Loss Remembrance Today

Today, October 15th, is Pregnancy and Infant Loss Remembrance Day.

I know the day is almost over, but for any of you who have ever been affected (either personally or through someone else), this day is for you and your loss.

Know that you are loved.

Remembering Our Babies

Ups and Downs

As with any situation, there are ups and downs. Today is an up day spiritually, but a down day emotionally (I just can not contain my tears).

It is amazing to me what a blessing Emma has been in our lives already. I thought I'd take some time while I'm already emotional and list many of the blessings that have come into our lives because of Emma.

• more fervent prayers
• the peace and comfort of the Savior in our lives
• greater love for our children
• renewed dedication to attend the temple more often
• overwhelming love and support of those around us - I wish I could verbally express how much it amazes me how many people are there for us whenever, whatever, however
• greater love and appreciation for those who support us
• chances to share the message of eternal families with others
• increased scripture study
• humility
• stronger desire to serve those around us
• gratefulness for the plan of Salvation and eternal families
• greater closeness to the Savior
• increased understanding of the Lord's hand in our lives
• new love and admiration for my dear husband
• more empathy towards others
• love - anywhere and everywhere

I know this isn't a comprehensive list. But I am sometimes overwhelmed when I stop to think what a huge blessing Emma has already been in our lives. I am so grateful for her and I pray that the Lord will let her be a part of our lives for longer still.

Angel Garden

As much as I'd love to never bury Emma, the time will come. I had been told by a couple of people that infants could fit into the same plot as an adult, without any extra fees or anything. Because of finances, this was my initial thought of what we should do. Tim has a grandpa buried in Springville and we both have grandmas getting up in age that live nearby. I thought I would see if either family objected to us putting baby Emma at the feet of one of her great-grandparents.

However, the Provo City Cemetery has an area dedicated to infants. It is called the Angel Garden. The pricing is much more affordable than that of buying and using an adult burial plot.

Last night we went to the cemetery to check out the Angel Garden. It's not gardenish at all. Besides the statue in the picture above, everything else is just grass - how you might expect a cemetery to look like. But I like it. I like the thought of her not being that far away. While we very likely will move away from here at some point in our lives, we're still here for the next 2 1/2 years for sure. And I like the thought of Emma being surrounded by Heavenly Father's other pure and innocent children. She'll fit in perfectly with them.

My Little Scare

On Monday night Tim was supposed to get home at 5:30. I was getting dinner ready while also keeping an eye on the boys playing outside. At around 5:15 I felt something in my lower abdomen area that hurt. It passed and I didn't think anything of it. That is, until it happened again. After about the third or fourth one I started to freak out and wonder if these were contractions I was feeling. I knew I needed to go lay down, but dinner was still cooking on the stove and I couldn't leave the boys unattended outside. Luckily, Tim came home a few minutes early.

He pulled up and I greeted him with a hug, a kiss, and instructions. The table was mostly set, it still needed silverware. He was to cut up the pineapple, finish setting the table, make sure the boys didn't run into the street, clean them up for dinner, and then feed them. I was going to go lie down.

He looked at me mighty confused. I knew I would need to explain more, but I had been hoping to avoid that because of the fact I knew it would make me cry and I was tired of crying. But I did explain and then I went and laid down.

I was still pretty scared about the situation. I felt like if Emma was born now, she wouldn't be able to survive the birth process. I also had been told by doctors that because of the situation, if my body did go into premature labor they would do nothing to try and stop it. I kept frantically thinking, she's not ready yet, she can't come now. Then a peaceful feeling came over me and I felt comfort as I realized that whatever happens happens. I've been telling people that this is Heavenly Father's plan for us, yet I still wasn't fully ready to accept his plan -whatever it may be. I realized that if Emma were to come now, I would be okay. Yes, she probably wouldn't survive the birth process, but that would be okay. That would be what the Lord had in store for us.

I then fell asleep. Tim came in after dinner to see how I was doing. I woke up and the contractions had stopped. Being pretty hungry, I got up to eat. While eating the contractions started again. They were on and off for the rest of the evening.

I haven't had any contractions since then and I've been told since then that if it happens again I should drink a big glass of water and go and lay down.

As scary as that situation was, I'm grateful for it. I think Heavenly Father knew I still needed to be humbled about the situation and that it is in His hands. There may or may not be more situations like this to come. I'm grateful that this one came, but I'm also grateful that it's now gone.

Emma's Name

On Sunday my sister asked me if we knew what Emma's name meant. We didn't and she told us what she had found. I looked it up to confirm it, and sure enough, the meaning of her name is pretty appropriate.

Emma means whole.

When we decided on the name, we had no idea. But now that we know the meaning, I think it fits her even better than before.

What Anencephaly Looks Like

I don't want to leave a sour note first here on Emma's blog, so I thought I would try to show others what anencephaly looks like (via ultrasounds).

This is an ultrasound profile pic of a non-anencephalic baby at 20 weeks. In my opinion, you can clearly see the head and see that it is a profile picture. You can see a little where the eyes, nose, and mouth's locations are.
This is Emma's 20 week profile ultrasound picture. She's got her head a little more tilted up than the baby in the first picture does. The arrow is pointing right to her nose. A little more below her nose (but actually to the left a little in the picture itself) is her mouth (the other whiteish stuff around her mouth I believe is faintly her hand, because she had her hand by her head for a lot of the ultrasound). The dark circle on her face (if looking at the picture, down from the nose and only a tad to the right) is one of her eyes. The other eye is on the other side of her head which is not in this picture. Notice that her head stops just a little above her eyes and continues at a downward slant. It's not the regularly full and round head that you would see.

Grrr

I'll begin by letting you know that I got my feelings hurt and I'm not very happy about it. From that statement, you can choose whether or not you want to read the rest.

As in most situations where there's something "different," you can expect that people will say things that are unintentionally hurtful. I started to expect it soon after we found out about Emma. There have been one or two things said to me that I've thought, I would've preferred they had not said that, but other than that there wasn't really anything that really bugged me until today.

Last night I went to join two different anencephaly yahoo support groups. I still have so many questions that I just can not find answers to and I feel like the best resource is going to be those who have gone through the same thing. While there are several different anencephaly support groups, these are both for mothers who have decided to not abort their pregnancies. Before you can join you have to be approved by their group moderators. It makes sense to me - it's a very sensitive issue and you only want people who are going to support and uplift each other. So I had to give them some information about Emma and I before they would approve me. Today I got emails back from both of the group moderators. One accepted me and said she was sorry that I had a reason to join their group but hoped I could find great comfort out of that group.

The other?

My approval is still pending. This is what has really hurt me. Apparently, because we're planning on inducing me at 35 weeks, I don't qualify as a mother with an anencephalic baby who is choosing to still carry her. I need to carry to at least 36 weeks to qualify. If I can explain my situation better, I might be allowed into their group.

You might be thinking, how did that upset her? And I don't know how to explain it any better, just know that it did.

I don't think I'm going to reply. My first reaction was to reply back about how I was just as good as of mother as anyone else and she had no right to not let me into their "mommy and me" group. But then I thought about it and realized that she's probably the moderator because she's been there too and I don't want to make anyone else's life harder by being mean to them.

In trying to see the positive side of things, it did remind me that Tim and I need to make this 35 week thing a matter of prayer. Which was our intent from the start, but I had been waiting to make sure that the doctor was on the same page first.

I'm glad the other group welcomed me in with loving arms. I plan to use them as a great and helpful tool and resource.

Doctor's Appointment

Today was the first time I've met with my OB/GYN since the initial diagnosis. On the day of our ultrasound he wasn't in the office so I met with another doctor in the office. On Friday it was specialists from the hospital. Today it was him.

While Tim and I have accepted this as Heavenly Father's plan for us, I still break down and cry every time I start to talk about it. I'm an emotional person to begin with, add in that I'm pregnant, and then on top of that, it's just a tear-inducing situation. So, of course, as soon as my doctor walked in I started to cry. It was a little awkward because he had a high school intern with him.

I only had a few more questions for him this time because I got most of my initial questions answered by the perinatologist at the hospital. We did talk again about the options that we have in this situation. I let him know that we want to continue on with the pregnancy.

We then talked about when we would induce labor. Because these babies rarely cause spontaneous labor on their own, it's basically up to the patient and the doctor. Before going in to the doctor's office I had thought about when I thought was a good time. It was a combination of safety, convenience, and just what seemed good. It ended up being around my 35 week mark. Before I told the doctor that he suggested 34 weeks and I told him I had been thinking around 35 weeks. He said, "let's do it!" So that's our new goal: deliver a breathing baby at 35 weeks.

My doctor is also LDS, in fact he's a Bishop currently, and we talked a little about the spiritual aspects of this entire situation. As I read more stories of others who have gone through similar situations before, I become more and more grateful about the fact that everyone has told us that it's our decision to make and they will support us in whatever we decide. Some families have had to fight their doctors on their decisions. I feel that this is a huge blessing that the Lord has given us at this time.

Thank You

The outpouring of love that our family has felt has been amazing. We know that with just us and the Lord, we can get through this. But with all of our family and friends rallying around us, I think it will make everything that much easier to get through. We love and thank you all for everything you do and have done for us. Please know that we will be there for you whenever you need us. I also want you to know that despite everything, we honestly do take joy in your lives, especially those of you who have babies or are pregnant. While I'm sure it will be a very real and hard grief that we will feel when Emma does die, we joy in the precious babies that are born and are so grateful for the miracle of life that does allow so many healthy and strong children to come into this world. I know what a blessing children can be and I pray for everyone to be able to experience that blessing.

Emma

Since the majority of the time we'll get to spend with this little girl will be while she's inside of me we decided to go ahead and name her. So the new title of this blog will be:

Emma's Story

Today's Update

I hope I can remember everything correctly and write it out so that it makes sense to others.

We went to the hospital today to do some further testing and to talk with some specialists. I didn't really know what all this was going to entail going into it. We ended up having two ultrasounds done, one by the ultrasound tech and the other by the perinatologist. It was confirmed that our little girl has anencephaly (we were originally told that it's a pretty easy diagnosis to make - the brain's not there). It was also confirmed that she is a girl (and as I'm reading more on anencephaly, it turns out that it's more common in girls than boys). She also has a few additional problems. The umbilical cord normally has three parts to it, two of which are arteries (Tim will need to correct me if any of this is incorrect) and she is missing one of those arteries. She also has some water in her kidneys. The third thing is that there's a little gap in her heart. Tim might be able to remember the exact term or location. Basically, if this was her only problem, she'd have to have heart surgery as an infant. Given the situation that she will not live, she will not be having heart surgery. Both the umbilical cord and the kidneys are of no effect in this situation except to say that because of the other problems she has, it just seems like things with this little girl just weren't quite right from the start. As far as the heart goes, the perinatologist said that it will not affect her while in utero - she's getting her oxygen and support from me and that little gap won't affect her. If my understanding is correct, however, it might reduce her lifespan if she does survive the labor and delivery.

We then asked the perinatologist all of our questions - and I had a lot. As others we've associated with (and been very pleased with) the general feeling is we're here to support you in whatever decisions you want to make. A lot of my questions to her were more asking her to either clarify or confirm things I had read. If you're interested, I'll make a list of things we learned:

• there aren't a lot of statistics out there because of the fact that many families choose to abort the pregnancies when they initially find out (so this skews the statistics of babies that die, etc.)
• anencephalic babies are much more likely to be premature, as are any babies that have birth defects
• anencephalic babies often don't cause a woman's body to go into spontaneous labor - the majority of these cases end up being induced
• they are fine doing a c-section or having me do a vaginal delivery
• the risk of the baby dying during birth greatly decreases with a c-section, but the risks involved to the mother greatly increase
• anencephalic babies are in general smaller than other babies
• because they do not have the full head, the vaginal delivery process may be a little different (i.e. the shoulders may be the biggest part to get through)
• if she's breached and it's the feet first, her chances of surviving the delivery greatly decrease
• if she's breached and it's the bum first, it does not change her chances of surviving the delivery
• while some of these babies will die while still in utero, the bigger portion of the babies that are born stillborn, die during the labor and delivery process
• they (meaning medical personnel) usually don't try to do anything medically to the baby after it's born - they want to allow the family as much time as possible with the baby while it is alive
• if we don't want to see the openings (because there's no covering over the head), we don't have to - they can put a cap on her and swaddle her in a blanket
• she does have bigger eyes (we found this out via the ultrasound) and then her head stops right above them and goes at a diagonal slant down
• she's pretty active - even though I haven't felt her move that much she was wiggling through the whole first ultrasound and the tech really wanted her to stay still (they said that maybe I'll feel her more in a little bit since she's a little on the smaller side)

They also had us scheduled to talk with a genetic counselor and possibly do an amniocentesis today. We opted out of the genetic stuff. The perinatologist told us that a couple with chromosomes that when combined cause defects, have the chances of 1 in 6 of having a defect free child. Because of the fact that we have two healthy children already, she really doesn't think it has to do with genetics. Additionally, even if it was a genetic thing, it only slightly changes the chances of this occurring again. Which, in case you're interested, the chance of this happening originally was 0.1%. The chance of it recurring is about 3 to 4%. However, they insist that for my next pregnancy I take TEN TIMES the normal amount of folic acid for the two months leading up to getting pregnancy and for the first month thereafter. By doing this, we reduce the chances of this happening again to 1%. If it was a chromosomal thing, I think the chances of it happening again are somewhere between 1 and 3%. The only reason we would think to do any of the genetic stuff, is if it would help further research. While we might participate in some studies, the genetic stuff that they would have done at the hospital would really only be for our benefit and let us know if it was a chromosomal abnormality or not. And at this point, it doesn't really matter to us.

As a side note, Tim and I are no longer emotional wrecks. We are doing tons better, have fully accepted this, and are moving forward with what we need to do now. The initial shock did cause us much grief, and I'm sure there will be more to come when she does die, but for now we're doing much better than I thought either one of us would be doing. Thank you for your continued thoughts and prayers.

We meet with my OB/GYN again on Monday.

Talking With Our Bishop

Late Tuesday night (the day we found this out) Tim asked the Bishop to stop by our house after a meeting they had together with some other people. The Bishop came by and we told him what we had found out and how we were hurting. He spoke words of comfort and we spoke a little about specific doctrines and other questions. Our Bishop left saying he would do his research and asking Tim to join him in a fast for Wednesday and he would return Wednesday night to talk more and to give blessings.

As planned, the Bishop came over last night. Both Tim and I were already feeling tons better about everything. We read from the Church's handbook of instructions about stillborns, when the spirit enters the body, abortions, and organ donations. Our Bishop said earlier in the day he had actually had a question that he didn't think the handbook cleared up, so he had called the Office of the First Presidency. Guess who was the person available to talk? President Monson. So we're pretty set now on what is correct, haha.

Talking about the abortion section was hard. We do fall under the rare circumstances category, but it doesn't mean that we're encouraged to do it by any means. Tim and I both agree that unless we feel a strong spiritual prompting to induce labor at this point (and abort the pregnancy) we will not choose that option.

Our Bishop put in a call to the Stake President to talk about the situation and to also ask if he knew our doctors. While I have one main doctor, on Tuesday he was out and I talked to his daughter who is another doctor that practices in that office. Our Stake President knows both of them and he said we're in good hands. He said they are the best of the best and they also are strong followers of the Savior and His Gospel.

Our Bishop had also been at a viewing right before he came to our house and he asked one of the employees at the funeral home about what they do for infants and the costs of those (something we had talked about on Tuesday night). While it is still a good chunk of money, it's not nearly as much as I thought it would be and we have the savings to be able to pay for it.

Tim, with the Bishop assisting, gave me a blessing. Then the Bishop gave Tim a blessing. The Bishop and Tim then left to go give another sister in the ward a blessing. When Tim came home, while he was eating (my amazing husband had been fasting for almost 24 hours), we talked about my blessing vs. the blessing he gave the other sister. He said he felt like he didn't really give me a good blessing. I don't remember what else he said, but he left it at he couldn't fully explain himself. Then we started to share our current thoughts and feelings on everything. I told Tim that I felt like we don't know what the Lord's will and we may not until it happens, but that we should move forward and take this one day at a time. Tim said that that's what he meant earlier by not giving me a good blessing (the Lord's will wasn't revealed). We both feel that we need to stay close to the Lord, do all that we can medically that is good for this little girl, and we will be just fine.

Before we even found this all out, Tim and I already had arranged with my brother to babysit today so we could go to the temple, so I'm looking forward to that experience. That's all for now.

Tim's Thoughts

I ought to write out a few of the thoughts I’ve had while I can.

I got to the doctor’s office before Tiffany and started hopelessly into some of my math homework, both excited to see my baby and anxious for all of the homework I needed to get done. The ultrasonographer was running behind and I was getting frustrated that she couldn’t keep her appointments on schedule. Forty-five minutes late we were finally called back into the room. Again I was almost angry that it was so late, but I was really excited to see the baby.

When it first came up on the screen, I was pleased to see the baby there. I thought it was amazing and I kept incorrectly guessing body parts as the tech scanned up and down the body. She measured a few bones and dimensions, but got up and left to get something. That made me a little mad too. I thought that of all things she ought to have everything that she needs. Then she came back with bad news. I made one light-hearted comment about a boy being the bad news and then the gravity of the situation set in. My little girl was coming to Earth without a brain and likely would not live to take a single breath.

I had not known how excited I would be for a little girl until I found that I may not get this one. My mind started racing of all of the things that she will miss out on and that our family may miss out on. I can only imagine holding her little hand in mine and watching her discover the world.

Now I pray with all that I have that she may still be able to live. Even one breath of air will assure that she can be Tiffany’s and mine after this life if we cannot have her now. It’s hard to know how much you can love an unborn child until something comes up. I continue to plead with my Heavenly Father letting Him know that I would do anything for this little girl. I also know that she is in His hands and whatever God decrees is right. I only hope that I can be strong enough to accept what I know to be true.

How We Found Out

It was my routine 20 week ultrasound appointment. We were really excited and wanted to know the gender (or at least I did!). Our appointment was at 3 pm, but because of a few last minute ultrasounds that were thrown in there, we didn't get in until about 3:45. The ultrasound tech was very apologetic and we began everything.

She started everything quite quickly and was stopping to measure and label things, but wasn't really telling us what she was looking at. At one point I asked what something was and she told me that it was the kidneys. After about 5 minutes she excused herself to go get something.

From some of the accounts that I've read online, apparently this is a major clue-in to something being wrong. Tim and I, however, had no idea. We started talking about how we wished she'd give us more details about everything that was happening. Tim stood up and tried to put the ultrasound back on my belly to take some looks himself, but I got too nervous that the tech would walk in so I told him not to. Instead he did it on his arm.

The tech walked in and told us that there was a problem. She said our doctor was gone for the day, but we could either see the other doctor or phone in to our doctor. I guess she's not allowed to tell us much, but she did tell us that there was only a brain stem and that beyond that no brain and skull developed.

She quickly looked at the gender, told us it was a girl, and then we were ushered in to one of the patients' rooms to wait for the doctor.

We both bawled off and on. At this point we still didn't really know much. The ultrasound tech had told us that most people choose to be induced at this stage of pregnancy, but to me that was out of the question.

We talked about what we thought this all meant. It was quite a wait for the doctor to see us. I was hoping that there was a chance for our child to live, but maybe she might be severely brain dead or something along those lines. We talked about how she had to have at least the front of her skull because the tech had said that she did have a face. We just didn't know.

When the doctor finally did come in she talked more things over with. She said the odds of this happening were 1 in 100,000 (although I saw something online that said it was 1 in 1,000 - not that it really matters). She made it clear that they have no idea why this sometimes happens. She also made it clear that if this little girl was to make it to birth, she would live minutes, hours, days at most. She told us we had options of being induced within the next week or carrying to full term. She referred us to the Maternal and Fetal Medicine Labs at Utah Valley Regional Medical Center where they have more sophisticated ultrasounds. She said they also might want to do an amniocentesis to check the chromosomes.

She was very kind and gracious, but it was still all really hard.

A few weeks ago, as we were driving in the car with asleep boys in the back, I told Tim that I kept having thoughts that something was up with this baby. Something was different. I told him I didn't know what though and the only thing I could come up with was conjoined twins. While the news was still a total shock, I feel like Heavenly Father was seeking to prepare me and I'm very grateful for that. I can't imagine how much harder this would be if I hadn't been prepared a little already. I'm also grateful that the Spirit prompted me to express my concerns with Tim. Even a few hours before the ultrasound I kept thinking how I was going to break the news to people that something was different. Thank you Heavenly Father.

I'm also grateful that the second to last thing I did before my ultrasound was to sit down (both my boys were napping - hooray for quiet time!) and read my scriptures. While there wasn't anything insightful that stuck with me, there's a peace and comfort that comes from reading the scriptures.

Hopefully this journey is far from over.

Introduction

This is a blog I created to track progress, updates, feelings, emotions, insights, and overall thoughts on our little girl's journey with anencephaly. First off, I want to be able to remember this time and cherish it in the future. What better way than to have a written account? Also, I hope that someday or sometime this might be of comfort to others that are going through similar trials. I don't know how this will turn out, I'll just let it take its course.