We want to share with you, our beautiful baby girl’s story….how God chose us to be parents of a baby that would not survive birth because of a condition called Anencephaly.
Instead of new years resolutions, Joel and I prayed and asked God for one word that we can concentrate on for the year. So for 2015 my word was “TRUST” and Joel’s word was “FOCUS”.
This year we had also started praying about having another child and that this next pregnancy would be an easier one, as my 2 boys pregnancies were very tough on me, with things like terrible morning sickness and pubic bone displacement which is just to name a few! We were also praying for a girl, especially as we were talking about this being my last pregnancy and that 2 boys and a girl would be our “ideal” family!
For some reason we just knew that this pregnancy would be different as it was our first planned pregnancy and so this time around we could pray for our little one from the start, as well as I could begin prenatal vitamins etc earlier! We seemed to know that we were going to have a girl, we felt strongly that God was saying that we would have a daughter and that we just needed to TRUST in God and keep our FOCUS on Him!
And so in our excitement once we had found out we were pregnant, we shared our amazing news… #3 was on the way to join our crazy clan!!
We were starting a new journey to becoming a family of 5!
Shortly after sharing our news, the dreaded morning sickness set in and set in hard! Nothing but sleep would help me get through, our house had to be scent free just so I could get through the day a little easier! We were hopeful that as soon as the 2nd trimester set in this would be behind us just the way it was when I was pregnant with the boys. Yea right! 12 weeks came and went and I was still sick, same with weeks 13, 14, 15 and so on! However the sickness did somewhat ease a little due to the fact that I had to do a complete overhaul with my diet, this was the healthiest I had ever been! This all seemed to just confirm to Joel and I that this would be our last pregnancy, we both felt that we were done and it seemed my body was giving pregnancy a good send off! Any other children from here would be adopted we would say and chuckle to ourselves!
One of things we were looking forward to was our 20 week scan, more so because we were so excited to find out the gender. However we were pretty impatient and so at 17 weeks we went to get a 3D ultrasound done. We just needed confirmation that we were having our baby girl! The ultrasound tech was so lovely about it all and told us “a girl for sure”, the only thing our baby girl wanted to show us! She was so squirmy through the scan and wouldn’t let us get a good look at her, she hid most of herself behind my pelvic bone! Joel and I were just in our bliss and didn’t even think twice about not seeing all of her body. We looked at each other and knew that we were both saying a silent thank you prayer, our dream had come true… 2 boys and now a girl! Perfect!!
The same then happened with my 20 week scan, our baby girl squirmed so much but yet hid herself as much as possible behind my pelvis, the only thing they could confirm was that she indeed was a girl! From all of what they could see, she was perfect and the only thing was that in order to get a clearer view we would then need to come back in to get rescanned. We didn’t think much of it and felt just so blessed that our boys, Elijah and Isaac, were going to have a baby sister!
Joel and I prayed about her name and just loved KYRA JEAN! The name meant “enthroned” and “from the Lord”! At first we wanted to keep her name a secret but we were just so excited and felt that we needed to share it immediately, so we started introducing our baby girl to our loved ones!
With all this happiness and excitement, I had told Joel at one point that it all seemed a little too good to be true.
We had decided to go back at around 24 weeks and get another scan, just to make sure everything was alright and to also get a better picture of our baby, as we didn’t get great profile pictures with the previous scans. The appointment was on a friday afternoon and for some reason that day I was feeling very uneasy. During the 10min appointment the tech said she needed to step out for a moment and then my mind began to race. I came home and told Joel that something was going on and that if it was bad news then the midwives would call straight away.
We were getting the boys ready to have a sleepover for the night, as Joel and I had already planned a “date night” for the evening, when my phone rang…it was the midwives! My heart seemed to stop beating when I answered, of course they wouldn’t say anything over the phone and so we dropped the boys off and raced home to meet the midwives at our house.
I kept hearing the word “TRUST” in my mind and felt like that this moment, right here, right now was going to change our lives forever…but I needed to “TRUST” God!
When someone is about to tell you bad news, you just want them to spit it out, it felt like we were all of a sudden in slow motion! I kept thinking that my baby girl maybe had a disability but we would be okay and we would deal with it, we could take care of her and we would just readjust.
“Anencephaly”, Kyra Jean has Anencephaly! What on earth is that? I’ve never heard of that so how bad can that be? Then the words hit like a knife to my heart! “Your daughter, your baby girl…the top of her head is missing, her skull isn’t fully formed and she has no brain! She will not be able to have life and that she may not even survive to term!”
I don’t even know at that point of what was going through my mind!
“TRUST” kept coming back to me, I knew God was doing something here…I thought that maybe He was creating confusion here and that this diagnoses could be the one that was wrong and that Kyra would be that “miracle baby”. I knew from this moment on our story was no longer our own, we needed to share Kyra with everyone.
That night was such a long night, Joel and I didn’t go on our date but we didn’t want to be at home either as the silence was too loud. So we just got in the car and drove around for a few hours not knowing what to say or do! When we came home, we just went to bed however I couldn’t sleep and so at 3am I posted on facebook a plea for prayer! Sharing with you all the hurt we had just encountered! Asking for help and knowing that through prayer anything was possible!
I just knew in that moment that Kyra’s life was meant for more and that this next part of the journey would be very painful but also very necessary!
When we chose Kyra Jean’s name, we loved it from the moment we came across it and now it seemed so appropriate. We were reminded of the same when we chose the name “Lael” meaning “for the Lord”, the baby we had lost 2 years ago through miscarriage.
A week later we were sent to a children’s hospital where they confirmed the diagnoses, they had struggled for 2 hours to get a clear view of our dear Kyra but they felt they had enough pictures to provide confirmation! With every ultrasound scan they were unable to give us any pictures, so we were thinking that maybe they had got it wrong and that God was hiding her on purpose!
We were then sent to meet up with the genetics team and couldn’t believe how we were treated, you’d think that because they deal with cases like this on a regular basis that they would know how to be compassionate! They were encouraging us to abort, telling us that there was no point in carrying to term and it would be a waste as there was nothing they would be able to do for us. We left the hospital in such anger! How could we ever even ponder the thought of aborting, we knew that God was at work here and that we were indeed going to carry our baby girl as long as we could!
The following week we were blessed to get transferred to a local doctor and also had the added benefit of still having the midwives for support!
Pregnancy was starting to get tough, I was still dealing with nausea and now I had Polyhydramnios (a condition of excessive amniotic fluid which is pretty common in these type of cases), so my belly was growing at a rapid pace. I also started struggling to breathe because of the pressure from my belly, my ribs were bruised and painful…and now I had the added risk from the placenta as it could rupture! I had to be on bed rest due to having false labour at 29 weeks and then again at 31 weeks. I looked like I was full term but yet had at least 9 weeks to go!
Not only was it hard physically, emotionally we were drowning! Joel and I didn’t know what to pray for anymore! We know God can heal and so we were praying hard for healing for Kyra! Asking God for a miracle!
Kyra moved constantly and she seemed to respond to us. We would talk to her and she would squirm and kick, Elijah and Isaac seemed to make her move the most! They would talk and shout at my belly, Elijah even layed his hand on my belly while we prayed for her and she kicked for him so much. They are such amazing little men and I just knew that they would be amazing big brothers, we could picture them protecting her like big brothers should! We would play music for her and lay our hands on my belly and she would respond every time. I loved feeling her move even when her jabs would sometimes hurt a little, Kyra just seemed to know how to make me smile when I was feeling sad! Its amazing how you can love someone so much even though you haven’t met them yet!!
At 32 weeks Joel and I decided to get a 3D ultrasound, we needed to see our baby girl and if she for sure had anencephaly, as well as I needed to have a keepsake! I don’t think it was denial as I was just trying to hold on to what God was telling me…”TRUST”, and so I didn’t know if that meant to trust that He would heal her or if it meant that through all this trust that He has a plan for her condition. So we went back to the place where we got the gender reveal as they were so lovely and compassionate with our situation! As the scan started my heart was beating so fast and it seemed that Kyra was moving to the same beat. This was it, I was terrified but wanted a glimpse into my little girl’s world regardless of what she looked like! Joel and I were praying so hard “God please let us see a full head”, and then there she was our beautiful little girl, we could see what the medical people saw! I tried so hard not to cry as I didn’t want to miss a moment of watching Kyra move and in that moment I felt comforted by Kyra! She moved so graciously all the while showing us her feisty side, I couldn’t help but smile at her!
For the next few days Joel and I wrestled with what we should be praying for now. At this point I was in a lot of pain, couldn’t sleep and struggled even more now to breathe. My high risk pregnancy was getting riskier and so we talked about what it would mean if we induced the pregnancy. We were scared of what it would mean for our family and knew that regardless of when the birth happened, Kyra would not be able to survive. The hardest decision we have ever had to make and so at 33 weeks we induced.
That Wednesday we went to the hospital and I was emotionally broken. The hours seemed to all stream together as we waited for the contractions to get closer. By the afternoon there was not much progress so the doctor had to try a different method and for the first time I got an epidural. The next stage would be intense by ways of pain and because we didn’t know how long it would be, as well as I didn’t want to spend my last moments with Kyra focused on the pain!
Kyra kicked hard through every contraction but she was in breech position. So Joel thought that he would try and talk to her, he layed his hands on my belly and asked her to change position. She then gave him a big thud as if in response and in minutes did a compete 180 and turned head down! We played some music to her, talked to her and prayed for her. I like to think that our spirits were intertwined and hoped she knew what I was thinking as well as all the love I had for her!
By evening the doctor decided to reassess me in the morning as there was no progress and told us to get some rest. Just before midnight we had finally fallen asleep only to be woken moments later by a loud bang, as if a balloon popped….my water broke! I was in such a state of panic as there was so much fluid, literally like a waterfall, and I watched my belly shrink to ¼ of the size it had been! I could now see Kyra’s frame as my belly shrank around her! The nurses rushed to clean me up as the fluid was toxic to me and then I started having panic attacks. I couldn’t breathe so they hooked me up to oxygen and gave me something to help me relax.
Shortly after 2am a weird feeling came across me, a feeling I had only known because I had felt it once before when I had lost Lael, a feeling of emptiness! I knew then that Kyra had passed away and I turned to Joel and told him that she was gone! My heart was so broken as I was so hoping that I would be able to hold her in my arms before she left this world, that I would get to comfort her in those moments and whisper in her ears that I loved her! My little girl was gone and now I still had to push her out! Things started to pick up now and so we called my midwife to come.
This was my first epidural, so I wasn’t in agony as like in my previous pregnancies…and so this time the room seemed so quiet, too quiet! 3 pushes and she was out…. 3:35am Kyra was born! I saw her as soon as she came out and was so in love. They laid her on my chest and I again found myself struggling not to cry as I wanted to be able to look at her and study her! She was so tiny, only weighing 3lbs 8oz, but she was beautiful! Kyra, my little girl was only missing the top of her head but everything else was there, she was perfect to me! As I held her hand and rubbed her soft skin, I just wished for this time with her to never end! She looked like her big brothers, Elijah and Isaac with one exception….. she had these very voluptuous lips!
We got to spend some time with her alone before the photographer came, we then took moulds and prints of her hands and feet. A couple hours passed and then the boys were on their way to come and meet their baby sister! Children don’t see the imperfections or differences that we as adults can see and so we knew they wouldn’t really notice her colour and Kyra had a bonnet on so they wouldn’t be able to see that part either. They had instant love for her and I loved how they looked at her! Elijah just smiled at Kyra, he wanted to hold and touch her. Isaac just wanted to play with her and kept saying in an excited voice “baby, baby”. We had explained to Elijah before she was born that she could only be with us for a short while and that she was going to go live with Jesus. He seemed to understand but still asked “mommy can she come home with us?” I just wished that we could of brought her home! Elijah and Isaac would of been just amazing brothers to their sister!!
A few family members then got to meet her and we did a small dedication for her. Shortly after a couple close friends got to meet her and then we were left on our own to say our final goodbyes to her! All that time with her just went too fast! I couldn’t believe that this was it, all I wanted to do was hold her forever! How could I say goodbye? How could I leave the hospital without my baby girl?
The funeral place was coming to pick her up and so I had to place her down in a basket that they had for her! My heart was wrenching, this was the hardest thing I have ever had to do….to kiss her one more time and to leave my precious baby girl there! She was inside of me for 8 months, I housed her in my womb and now to forever be apart from her was just not fair! I have never cried so much in my life before, coming home was a nightmare!
All that I dreamed of, all that we had dreamed of was just gone! The ideas we had of how it would be going from the 4 of us to 5, what it would be like to change a girls diaper instead of a boys, to shop for girls dresses, to brush her hair, paint our nails together….all of it gone! Our daughter was gone and now what? Now we needed to focus on Elijah and Isaac, to try and be strong for them! To create a “new normal” for us and for the boys!
And so for now its just one day at a time..
I know through all of this that Kyra’s story needed to be shared, that even though she was born quiet into this world, her life story would speak volumes. I know that God wants us to create a legacy for her, that we now need to do something that will make an impact and also bring glory to Him! We are not quite sure what that entails right now but in the meantime here is Kyra’s birth story and here are some pictures of her! We are sharing her beauty with you!
We don’t always understand why certain things happen, they may not seem fair at the time but one thing I have come to know is that God has a plan! Kyra’s life was not in vain and neither was Lael’s! Through our brokeness we feel honoured that God has chosen 2 of our children to join him immediately, they were born into purity. We will for sure be haunted with wonder but the comfort we lean on now is that they are with Jesus! I am a mother of 4, my 2 boys here on earth with me and my 2 girls dancing in heaven!
We want to say a huge THANK YOU to you all for journeying with us and for all of your prayers! Prayer is very powerful and we are so blessed that Kyra got so much prayer! We pray blessings upon you all!
We also want to say a special thanks to:
Niagara Midwifery for being with us through all the births of our babies!
“Now I Lay Me Down To Sleep” for the precious photos of our baby girl!
“Anencephalie-info.org” for providing information that help parents in these circumstances!