On August 11, 2013, my husband and I got the most exciting news of our lives, which was the fact that I was pregnant with our first baby!
Nothing on earth can compare to the absolute joy that filled our hearts that day! Soon after that I started having my prenatal appointments and ultrasounds, which were so exciting and made everything feel so much more real. Also, seeing the baby for the first time was so AMAZING and unforgettable, even though he was still so tiny at the time.
After multiple visits to the doctor I had to have some lab tests done, which I wasn’t all that concerned about because most of what they were testing me for were things that I was confident I didn’t have. A few days after that visit I received a phone call from the doctor’s office informing me that I had tested positive for carrying Cystic Fibrosis, which was something that I was completely unaware of. I was then told that I didn’t actually have this ailment, but that I do carry it. Next, they asked me if it was in my husband’s family, or if I knew if he was a carrier as well. Of course we had no idea, so we started calling some of his relatives. It turned out that Cystic Fibrosis is actually in his family, which the doctor said wasn’t good due to the fact that if both mother and father are carriers, then the chances of a baby contracting this problem is 1 in 4.
The next step was to go to see a specialist where we met with a genetics counselor, as well as to have Sully (my husband) tested. The meeting was very scary to say the least! The counselor actually suggested that we should consider terminating the pregnancy and trying again. Obviously we were 100% against this thought!
The next thing that happened was that I was then sent back for a level 2 ultrasound, because the specialist wanted to see if there were any indications telling us that the baby had Cystic Fibrosis. One main thing that stands out is that the bowels would glow if it was present, thank God this was not the case!
The next chapter in our pregnancy journey began an even more challenging season for us. Another specialist began telling us that he saw something completely different from what we were even originally looking for during the ultrasound. His first words were, “I don’t like what I am seeing.” He then began to tell us that it didn’t look like our baby was developing the way that it should be. He said that his arms, legs, skull and chest cavity were very behind on the growth scale and that he was 99.9% sure that he was seeing a baby with Skeletal Dysplasia. This was such a foreign term to us and we really began to experience deep fear about our baby. The doctor’s primary concern was that he needed to see some growth in the skull and chest cavity in order for the organs to develop correctly so that the baby could breathe on his own outside of the womb. Obviously, we left this appointment feeling shocked and completely terrified!
Part of me was in such disbelief; what are the odds that our very first baby would have these problems when we have nothing even close to this on either side of our family? The only thing we knew to do was to instantly start lifting up our baby consistently in prayer, as well as to also get some support and prayer from our family and close friends.
The next visit with that same doctor, he explained to us that if the baby did indeed have Cystic Fibrosis on top of the skeletal dysplasia, it could be really dangerous. The problem was that the test they wanted to run with Sully to see if he carried it was fairly expensive and we really couldn’t afford it. At least at this visit we did have some joy as we found out that we were having a baby boy! Despite the challenges that we were dealing with, it felt so amazing being able to finally call our baby by name.
I had one more visit in the same office and once again they were throwing around termination and referring to our child as “not normal.” Next, the doctor told us that he was almost positive that the type of skeletal dysplasia that he was seeing in our baby was Achondroplasia. This was another foreign word to us that we had never heard of. He then explained to us that it was a type of dwarfism, which causes the long bones not to grow properly. Obviously, that came as quite a shock to us considering we had no history of this in either side of our families. After that appointment we decided that we would not return to that doctor’s office due to the fact that they had no bedside manner and they continued to suggest termination, which we are fully against! I then went to my primary physician and asked if he would recommend another specialist and told him that we also wanted a second opinion regarding our baby’s condition.
The next specialist that we were sent to was such a kind and gentle man, which was so refreshing. He took a look at the baby and measured everything and then with a heavy heart and a soft voice he confirmed the Achondroplasia diagnosis. I thought that having a nice doctor would make this easier, but in a way it was harder because I think that part of me was in disbelief and I was blaming all of this on the other doctor being insensitive and abortion driven. My parents were with us that day and we all processed the news together. It was hard, but having them there brought some comfort that we really needed. After this, I then began to feel nothing but fear, anger and hurt. I couldn’t understand why this was happening. Why couldn’t I have just one normal and joyful appointment? Why were all these things going wrong with our baby? At this appointment the doctor was miraculously able to have the fees waived for Sully’s Cystic Fibrosis testing. After the test, we left anxiously waiting for those results. We received a call just a few days later and the news was that Sully did not carry Cystic Fibrosis! Finally we received good news!
After dealing with so much fear and hurt, I got burned out and realized that I needed to fully go to The Lord with this, which I wasn’t truly doing. Sure I was praying for my baby, but I hadn’t really leaned on God completely and put this situation fully in his hands. I then remembered that just a week before hearing Jude’s first diagnosis, I was at breakfast with my sister and her boyfriend and I was telling them that I had a huge heart for children with special needs, challenges, illnesses and disabilities. I was telling them that I wish I had the finances and the resources to adopt those children and to give them a life filled with love and happiness. Then it hit me, The Lord chose me to be this child’s mommy. He trusted that my heart could handle it and He knew that I would love this baby regardless of what challenges he may face and that He picked us as his parents.
One day shortly after this last appointment, I was expressing my fears to my mother and told her that one of my concerns and what hurt me the most was when people referred to our baby as abnormal, because he is normal! Maybe God made him a little smaller, but he is a normal human being that God formed miraculously. I don’t want him to ever feel different or odd. I said to her that I didn’t know who got to determine what made someone normal. There are so many different people in the world with different shapes, sizes and colors. So, how wrong is it to refer to someone as not normal or abnormal. She then told me “Hannah, that is precisely why God has blessed little Jude with you for his mama, you will see him as normal and beautiful and wonderfully made and you will fight to have everyone in his world to see him through Gods eyes.” Then it really hit me how much of a blessing it was that this perfect baby boy would be ours.
The last appointment that we had recently, they gave us a definite confirmation that our baby does have Achondroplasia. They also told us that his chest and skull had actually developed some! However, they did inform us that there needs to be continued development over the coming weeks in these areas for the baby to be able to live outside of the womb.
Therefore, we are asking for you to please stand with us in prayer, as we believe for Jude to continue to grow and develop healthy and strong over the coming weeks. Also, pray that we will be prepared for the challenges that come with a special needs child, even though we believe for a miracle in my womb. Also, pray that we will be the parents that Jude needs us to be. We are so thrilled and thankful for him and can’t wait to meet him face to face.
13 For you formed my inward parts;
you knitted me together in my mother’s womb.
14 I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
15 My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
17 How precious to me are your thoughts, O God!
How vast is the sum of them!
18 If I would count them, they are more than the sand.
I awake, and I am still with you.
The text I sent my family after they confirmed his diagnosis…
Here is our beautiful baby boy….