Welcome to evabeth.com!
Thank you so much for visiting our blog. Here we will share about our lives living with a child with Cornelia de Lange Syndrome.
At the start of 2011, we found out that we were expecting our second little one. We were over the moon and knew Eli would be a brilliant big brother. We went for our 20 weeks scan and as normal the radiographer was scanning away and was silent, doing all the measurements. We remembered that from Eli’s 20 weeks scan so we were happy enough. At that scan we found out we were having a girl!! We also found out there was a problem with the baby’s brain, we didn’t know what but we were referred to the Royal Victoria Hospital in Belfast. We went to the Royal one week later and I had a more detailed scan. This is when we heard the news that no parent wants to hear…we were told there seemed to be a space in the baby’s brain and to expect the worst, possibly severely brain damaged or not even making it to term. It was like a kick in the stomach, we were numb but that verse in Philippians jumped straight into my head and I said to Paul in the car on the way home…’I have that peace, I don’t know how but I have that peace’. Paul was the same and we knew there was absolutely nothing we could physically do but leave it with our God.
Cut a long story short we had tons of scans, fetal MRI scan, fetal heart scan and regular checks, doctors were baffled so we awaited the birth of Eva not knowing what was ahead. Eva means ‘Life’ and we chose her name believing that she would be full of life. After having a very different and difficult pregnancy this time, on 14th September 2011, our little warrior princess, Eva Beth Jenkins was born at 9.56am weighing 5lb 3oz!! We prayed that Eva would cry as soon as she was born and as she was lifted out, she was born by caesarean section, we heard that loud cry. At that moment in time, we were just so relieved she was here and breathing on her own. The neonatal team was on stand by and Eva was checked over straight away and we were alerted of a few complications that Eva had physically. Still, the little lady was here, we were so thankful.
Eva was diagnosed on 20th July 2012 with a rare genetic condition called Cornelia de Lange syndrome (CdLS). She was also diagnosed with Holoprosencephaly (HPE). It was a lot of take in at the time and it was hard…we had searched and waited for answers or a diagnosis but when it actually came we just felt sad and our hearts were heavy. With all the information you can obtain on the internet, reading the information on CdLS and HPE was a bit overwhelming at the start and at times still can be but we take each day at a time and we are so blessed to have Eva.
Many tears have been shed and I’m sure many will be shed over the years but it says in Psalms that God bottles our tears so we’re ok with that, He’ll just need a good few bottles for me I’d say!!
Eva is now 3 years old and an absolute wee darling. We love her and Eli with everything within us. Yes, Eva may have a disability and additional needs and have a lot of difficulties she has and will have to deal with throughout her life but she is our beautiful daughter and Eli’s adorable little sister and we know that God has a plan and a purpose for her wee life as much as He does Eli’s.
Why Eva?…we don’t know and don’t think we’ll ever have all those wee questions figured out but really, does it matter. God has blessed us with 2 amazing miracle children and has entrusted us with their lives, what a privilege. We know our God is able and no matter what we face and what the future holds, He will go before us. My baptismal promise was Deuteronomy 31 v 6:
“So be strong and courageous! Do not be afraid and do not panic before them. For the LORD your God will personally go ahead of you. He will neither fail you nor abandon you”.
I’m believing that.
We have been so blessed to have amazing family and church family and friends around us, helping us practically and surrounding us in prayer. This has been amazing.