I remember the day. It was October 19th, 2010 and I had just had two positive pregnancy tests. I must admit, I was scared. My youngest was not 2 yet, and I wasn’t sure how I felt about having another in diapers. But it was another blessing from God and my husband and I were ready to take on the challenge. Our first ultrasound was at 13 weeks because I took a tumble down my outside steps after slipping on some ice, two days before Christmas. Everything looked good, but the technician wasn’t able to tell the sex yet. We had two beautiful girls at home so really wanted a son to share them with. Our next scan was 20 + 2, and I went back alone at first with my husband, daughter & mother waiting to hear the sex.
I felt a little odd when the tech asked me to turn away and lay on my side as they were taking pictures of the baby’s heart. Then she said she was going to get my family “And you are having a boy!” I cried – that was all I had wanted to hear. My husband didn’t hear what she said at first, but was thrilled when I told him.
I had a regular obstetric appointment an hour later to get the results to make sure all was well. When my obstetrician came in she started telling us that everything was good, BUT, there was a small amount of fluid around his heart.
Oh man, that was not the news we were hoping for!
Two days later we went to see the peri and he said “there is fluid around the heart, and the nuchal fold is thicker than his gestational age.” We were asked if we wanted to do an amnio and we declined. We ended up getting one a few weeks later along with extra blood work. Everything came back normal.
Then, at my next appointment with my obstetrician it was recommended that we transfer to the hospital that my peri was at, so he could take care of me and my son. We have one of the top hospitals in maternity care and I must say we were so grateful for that! So I had no problems transferring.
The weeks went by and then our next scan came due and that’s when we heard the term Fetal Hydrops. “There is now fluid around his heart, in his chest, under his skin”. My baby boy is so sick. We took a couple of trips to Pittsburgh to see other specialists but the news never got better.
During my 32 weeks of pregnancy I had 3 amnio reductions done, taking a total of 7 litres of amniotic fluid from my tummy so I could breathe and move, but it returned every time. Xander underwent surgery to remove fluid from his chest, but it too came back. I was gaining pounds by the day and I remember at my last appointment the midwife told me I was measuring at 49 weeks pregnant when I was only 31. That is not normal – I was placed on bed rest. Xander moved so much, he enjoyed the swimming pool I had going on in there. I have to say that was my hope. Every time I felt him kick I knew he was alive! How could I give birth to such a sick baby when he moved like a healthy growing boy? I never understood it – but then the day came.
I was so uncomfortable – my belly was so big that I don’t think it could have gotten any bigger; I could not sit, stand, or lay down. I was contracting, I could not breathe and I was so swollen that I felt like my ankles were going to explode.
On April 30th I went in to the labour and delivery because I simply could not take much more. My doctor gave me my last amnio reduction and my fluid was stained. Afterwards my kidneys started to fail. I was having mirror syndrome – I was mimicking the illnesses of my son. They scheduled the c-section for 3rd of May – and I truly believe they scheduled it on that day because the 2nd was my birthday.
The day came, and I was scheduled for 9am. It was about 20 past 9 when my doctor came and gave me a scan in front of the team of doctors. I don’t’ remember much because I was having some complications ( I lost a lot of blood and needed a transfusion) and the medicine put me out. My husband was there by my side and I remember seeing him, once, for a brief moment. He was told to go by our son, and they explained to him what was going on. He had chest tubes and was on a vent. I was stitched up and sent to recovery. I remember opening my eyes and the neonatologist telling me I had to try and stay awake so I could be with my son before he would pass away. He told me how sick he was, and we decided that we would not put him through extensive surgeries when he was likely too sick to make it anyway. We opted for comfort care. I knew in my heart of hearts that it was the best thing for him – I didn’t want him to suffer. I didn’t want him to be sick and I didn’t want machines breathing for him. That wouldn’t be fair on this tough boy who fought for so long. And I couldn’t bear to look at him that way – It would make me feel so selfish. I knew I had two girls at home that needed their mom, and if God’s plan was to make Xander his then who am I to change those plans. So we didn’t.
Xander lived for 3.5 hours, and I remember holding him. He was so precious – he looked just like his daddy and his big sisters. He too had red hair and fair skin. He weighed in at 6lb 9oz and was 19 inches long.
He is my son, and nobody can take that from me. Xander will always and forever be in our hearts and I will love him unconditionally ‘till the end of the world.
