I felt that the best way to start this blog was to take you back to my original post I put on our family blog before I had Liam & Logan. A lot has obviously happened since this time & a lot of these questions have been answered & his diagnosed changed back to Semi-Lobar HPE, but it really captures how I was feeling at this time.
You can also view the original post here
Oct 30th, 2011
I think this post will explain why I haven't been the best "mother to be" with keeping you guys updated w/ all the wonderful changes that happen when you are expecting your First Set of Angels into your Home :) It was hard for me to post on the Blog and "pretend" like things were going wonderfully when Indeed we were being faced with some big Challenges but I wasn't quite ready to tell these things to the World (my Blogger world that is), well now I am ready... (this post will be long and I am putting it more into a journal format so I have it to remember by later)
Timeline: 20 wks of pregnancy – Aug 23rd
We had been going into the Dr every 4 weeks for Ultra sounds & at our 20 week UltraSound we were excited to see our Little Boys again and confirm that they were still boys (which we had discovered at our 16 week appt). Everything seemed to be going smoothly and the Ultrasound Tech was doing all the needed measurements as we Ooo'd and Aww'd at the little guys. After a little while she said that she needed to go get the Dr because there were some "concerns". I will never forget how I felt and of course fear came across me. What were these Concerns? and so of course I asked and all she said is that it appeared that Baby A had a Cleft Lip and there was something with the brain and with that she left. When she left Mike and I just looked at each other and were of course very confused and concerned. No one wants to hear that there is something wrong w/ their Baby and the thought that it dealt with the Brain made me even more nervous.
When the Dr came back with her he explained that Baby A had a Cleft Lip and they were not able to locate the Corpus Collosum in the brain. Of course I didn't quite understand everything that was being said right at that moment but all I did understand was that something was Wrong and even if the Dr hadn't said much all I needed was to hear the tone of his voice to understand the seriousness of the situation. After that we met with the Dr more and were advised that we needed to have another Ultrasound with a Specialist @ the Hospital and after they got the results it would be decided as to how my care would continue because this was not a common thing to see. Our Dr felt that we would need to transfer our care to the University of Utah but one thing was for certain - our Journey of starting our family continued to be a bumpy one & again my Strengths were tested...
The next day we did see a specialist and they confirmed what our Dr had seen. The baby had a Cleft Lip and he had a Cleft Palate and the section where the Corpus Collosum should be was not visible. We then were scheduled to see a Brain Specialist at the University of Utah to get a more detailed understanding of what this all meant.
Of course we did our Research and were comforted in the fact that this was not a matter of life or death and the Cleft lip and Palate were repairable, it would just take a series of Surgeries through the course of our baby's life. The condition of the Corpus Collosum is called Agenesis of the Corpus Collosum were there is no treatment you just have to treat the symptoms (The Corpus Collosum is the section of the brain that acts as the communication center between the left and right hemispheres of the brain).
Time Line – 21 weeks of pregnancy, Sept 1st
When we went to the University prepared to ask our Many Questions something else was discovered during the Ultrasound. Our baby was diagnosed with Holoprosencephaly (it took me a few weeks to even learn how to say this word). Great! ANOTHER new thing to learn and this is something that I was not Prepared for! I had no questions!! All I could do again was cry and try to comprehend the things that we were being told. We even had a Genetic Counselor come speak with us because in these types of "cases" it is common for there be a Chromosome Defect and if there was it was called Trisemy 13, where there is an extra Chromosome 13 and they consider that to be Lethal (meaning the child would not live much past birth if he made it to birth). Then we were told that if he did have this Chromosome Defect and if the babies were Indeed Identical then Baby B would have it as well and so far the thing that was keeping me somewhat optimistic was the fact that there was another Baby in there that appeared to be Totally Healthy and now that was being taken from me! Of course I felt Robbed!!!! There is a test we can do to see if they have this Chromosome defect but the risks outweighed the positives for us so we turned it down. It was even brought up the option of doing a "selective" birth, where we would abort our Baby A and that was of course OUT OF THE QUESTION! Why were these Dr's talking to me like I was an adult??? I felt like a little kid trapped in someone else's body expected to be Mature and know how to deal with these things.
Here is a definition of what Holoprosencephaly (HPE) is. At this point they had put our baby into the “SemiLobar” category
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HPE is a disorder characterized by the failure of the prosencephalon (the forebrain of the embryo) to develop. During normal development, the forebrain is formed and the face begins to develop in the fifth and sixth weeks of pregnancy. HPE is caused by a failure of the embryo's forebrain to divide to form bilateral cerebral hemispheres (the left and right halves of the brain), causing defects in the development of the face and in brain structure and function.
This brain malformation can range from mild to severe and is classified into four types:
(1) Alobar (severe) - where the brain is not divided and there are severe abnormalities.
(2) Semi-Lobar (moderate) - where the brain is partially divided and there are some moderate abnormalities; where there are two hemispheres in the rear but not the front of the brain.
(3) Lobar (mild) - where the brain is divided and there are some mild abnormalities.(4) Middle Interhemispheric Variant (MIHV) - where the middle of the brain (posterior frontal and parietal lobes) are not well separated.
HPE is a condition without a cure or a standard course of treatment. Treatment for HPE is symptomatic and supportive. Children with HPE can also have secondary conditions such as mental retardation, epilepsy, diabetes insipidus, pituitary and hormone disorders, movement disorders and spasticity, gastroesophageal reflux, respiratory disorders, and hydrocephalus.
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At this point the Dr's couldn’t tell us much as to whether or not they think our baby would live a long life they just said that children with Semi-Lobar live alot longer then children with Alobar (with this condition children have a 95% chance of not surviving past birth). So the answer to your question is "Yes I was Freaking out!"
After that Appointment our Medical Care was transferred to the University of Utah and that is where I will deliver. We were having appointments every 2 weeks to check on me and they continued to schedule ultrasounds for every 4 weeks w/ an MRI scheduled for Oct 20th so the Dr’s could get a much closer look at Baby A’s brain.
During these ultrasounds it was also found that the fluid in Baby A’s sack was on the High side which can cause Preterm labor as well as put pressure on my diaphragm making it hard for me to breath. This would continue to be watched closely, BUT Baby B was still looking Healthy and besides the already visible concerns w/ Baby A he was growing right on track as well and all of his organs appeared to be working well and he always had a Strong Heart Beat. We were happy/relieved to see this. Now the question was, does our Baby have the Chromosome Defect and what exactly is our baby going to struggle with in his life and the worst thought of all was “Will our Baby A ever come home with us?”
The Dr’s couldn’t answer this for us. Children in these cases are all so unique and different that until he is here we really won’t know how he, himself, will do.
Timeline – 28 weeks of Pregnancy, Oct 20th
This was the day of the MRI and where we were supposed to also meet with a Cranial Facial specialist to discuss the process for repairing the palate and lip and the chances of our baby being able to take a specialized bottle for his feedings or have to be fed through a feeding tube. Sadly, the specialist was in a car accident and was not able to meet with us.
We got our MRI results a week later and this is what we found out:
It was confirmed that our little Baby A does indeed have Holoprosencephaly BUT they moved him into the Lobar category. If you remember they thought he was in the SemiLobar category which is under Alobar (which is the most Severe) but luckily Lobar is even lower on the spectrum and is considered to be a more "milder" form of this condition. Here is the defination of this type:
Lobar (mild)--where the brain is divided and there are some mild abnormalities (there is a well developed interhemispheric fissure however there is some fusion of structures).
Although it says "mild" we still needed to acknowledge that there is a defect to the brain and so how our little baby will do is still unknown. Every baby is unique and the way they progress is completely dependent on them and their own abilities.
The Dr also confirmed that the Corpus Collosum has not formed correctly and is partially missing, but again we are glad that part of it is there so hopefully it can be strong enough to make up for the section that is not there. Also when they reviewed the MRI results they looked for signs of a condition called "Heterotopia". The way the Dr described this to me is that sometimes the brain's fibers can be somewhat "tangled up" and will also affect the functioning of the brain but again we were Blessed and they did not find signs of this. The Dr said that although this is good, it still cannot be ruled out because the brain continues to develop into the first few years of a child's life so this will need to be something that they will continue to check after he is born.
She also referred me to check out a website for The Carter Center - if you would like you can check it out at www.carterdatabase.org/hpe. There are some articles you can read and also links to other sites that work w/ HPE (Holoprosencesphaly).
So right now this is where we stand. I have an appt on Thursday & we can discuss even more what was found on the MRI but I do feel strong that our little baby A will come home with us & because of his brother, he will learn much from him and will impress the Dr’s & ourselves with everything that he will be able to do despite his disabilities.
Honestly through the course of all this I have experienced many different Emotions including Anger, Sadness, Jealousy, being inadequate, but most importantly Comfort!! And I really owe this Comfort to our Heavenly Father and for our Wonderful Friends and Family who have been praying for us. I know that this is helping us to Press Forward and is helping our babies to grow and be as strong as they can be.
I do find myself, once again, asking why?? Why are we going through this trial? But if there is something I am certain of it is that we will have a Little Angel amongst us and although it frightens me not knowing what will happen and of course doubting my own abilities, I also feel blessed to get to have him be a part of our lives. And we are so blessed that we have two babies coming because I KNOW his brother will help strengthen him and is probably helping now even though they are still inside of me.
I hope that this post doesn’t leave you having Pity for us or feeling any type of Sorrow because we are still early in all of this and honestly my pregnancy has been great! I feel great (although I am already measuring almost at full term) and we really have a great support group and are blessed to be so close to a hospital that is able to take care of our Baby the way he needs to be, I just felt ready to tell my Blogger Family what was going on. I will continue to keep you updated and I hope that the news continues to get better but I really appreciate you all and appreciate you continuing on this journey with me and my family :)
We Love You!!!
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