Mom to Gideon Raymond Matthew
March 30th, 2011 – April 16th, 2011
Conwy, United Kingdom
Gideon, my first child, a tiny warrior, died in the special care baby unit at only 17 days old. This is his story.
We had been trying to get pregnant for 2 years, so the day we got our first ever positive pregnancy test was the most exciting and happiest of my life. But I was also cautious; I was terrified I was going to miscarry, and so we tried not to tell people for a while. But at 8 weeks we had a scan, and our baby was fine, measuring on target with a good heart rate, so we plucked up the courage to announce the pregnancy. Everyone was so happy for us, having assumed we’d need fertility treatment to get pregnant.
At 9 weeks though I started spotting for 2 days, I ended up in labour and delivery, thinking our little baby had died, but they did a scan and everything was fine. At my 12 weeks scan, everything was good, with the baby measuring on target and to celebrate we bought a beautiful cream blanket for him. We were so happy.
At 17 weeks we went for an elective gender scan. I always knew in my heart it was a boy, although my family thought a girl. We had already chosen our names, after much deliberation, and for a boy I had one day just thought the name “Gideon,” I have no idea where the idea came from. Later we learnt Gideon meant warrior, we had no idea how meaningful that would later become.
At the scan Gideon immediately showed us he was indeed a boy, not shy at all, and I was so thrilled, and so happy. My partner would get his son; we were the happiest we had ever been, every day I imagined motherhood, and the joy it would bring. I read to him at night and I talked to him during the day. I planned a natural waterbirth, with hypnotherapy, and read up on breastfeeding – only the best for my boy.
From then on I allowed myself to relax, the year before we had lost my father at only 61 years old, and Gideon was everyone’s rainbow, everyone’s bright star in the stormy weather. Even though everything looked good, I took it very easy, I didn’t do much exercise, I rested often, I never truly felt safe. I had a lot of pressure on my cervix, which I assumed was normal and I had much pelvic pain, which I thought was my uterus stretching. But despite these worries, we went out and bought hundreds of baby clothes from the second hand stores, we were full of joy and love for our unborn child and the innocence that nothing could go wrong now.
At 21 weeks I had our anatomy scan, but the technician couldn’t complete it, saying she couldn’t see the baby properly and to come back in 2 more weeks. I was upset, but took it as an opportunity to see my baby again. I never had the chance to go back.
At 21 weeks and 2 days, I spent one full day out shopping; I came home and had a gush of red liquid. I wasn’t that concerned, but since I am O negative I called labour and delivery and they told me to come in. They had a look and told me it was probably caused by thrush and not to worry, but to come back on Monday for my anti-d shot. They didn’t check my cervix.
On Monday I went back in (more walking) for my anti-d. They had me stand for over half an hour waiting as there was nowhere to sit down; I felt a lot of pressure and felt very uncomfortable. I finally had my shot.
On Wednesday, 21 weeks, 6 days, we went to the supermarket, but I wasn’t feeling well. I felt off, and my pelvis hurt and the baby felt like he was pushing down on my cervix. After a few minutes on my feet, I decided it was time to go home. I didn’t feel right at all. In the car I jokingly rubbed my belly and said to Gideon, “You can’t come out now, at least hold on until viability” I didn’t know how close to the truth I was.
I went home, I could feel something inside my vagina – it felt very wrong. I sat down on the toilet and felt and heard a pop, and a sudden gush of fluid. I looked down to see bright red liquid. I knew it wasn’t good. I stood up and it was like a torrent of liquid, soaking my clothes and pooling on the floor, I knew then that my waters had broken. We hurried to the hospital, I soaked the back seat, crying hysterically the whole way and praying to God that this wasn’t true, that he wouldn’t take my little guy.
My worst fears were confirmed at labour and delivery, I’d had a full rupture of membranes, known as pPROM, preterm premature rupture of membranes. They told me to abort Gideon, that he wouldn’t make it, even if he didn’t come for a few weeks, his lungs wouldn’t develop and he would die after birth, and that I was at risk of uterine infection and sepsis. I cried, I begged, I pleaded, and then I refused. He was still alive, still kicking. He was my warrior and I was not giving up on him.
They kept me in labour and delivery, waiting for me to go into labour, but I didn’t, I was on antibiotics every day to prevent infection. And a week and a half later I still wasn’t in labour. Every day doctors came to tell me to abort, that my life was in danger, that I would get sepsis and die. They tried to make me walk around, but I insisted that bed rest was essential to keep Gideon in. Every day I ignored their advice. Every day I woke up to my Gideon’s kicks, every time I heard his heart rate I thought “this is my warrior, he is fighting, so I can fight too.” I was in the labour ward, so every day I saw and heard hundreds of babies crying, seeing happy mother’s walk the halls…mothers with babies. I tried to be happy for them, but felt such pain that my little one had to fight so hard, and still might not make it.
At 23 weeks, they suspected I had an infection. They told me it was time to induce to save my life. I went down to the hospital chapel and wept. My partner and I held each other crying, and talked about the best thing to do. We decided if my swabs came back positive, then we would induce. My temperature, blood pressure and heartrate were all normal, so we decided to wait until the next day. I was harangued by doctors: I was being foolish, I was going to die, I HAD to induce. They had me on IV antibiotics and oral antibiotics. By some miracle, my swabs came back negative and I was fine.
At 23.5 weeks they finally moved me, by ambulance, to a hospital with a special care baby unit that would try and help Gideon if he was born now. I spent the first few nights in the early labour ward with women who would all go home with healthy babies. Eventually they moved me to my own room. There was no more talk of abortions; I was actively encouraged to make it as far as possible. But they still tried to force me to walk around, telling me that bed rest would not help and it was unsafe for me to stay in bed. I ignored them as best I could, only getting up to go the toilet, shower and occasionally get food. 24 weeks came and went, and I was joyous – my warrior was fighting his fight. I had a scan which showed almost no fluid, only 1cm, but my Gideon was even kicking around on the scan, showing his strength, even though he looked really cramped and uncomfortable.
I got past 25 weeks, drinking a gallon of water a day, and eating lots of protein to help him grow. The doctors said this wouldn’t help, but I ignored them once again. However, I started to walk around a little, at 25 weeks and 2 days they finally stopped my antibiotics. I had another scan at 25 weeks and 5 days, she said he was head down and deeply buried in my pelvis. No one said this was a bad thing.
That night I had really bad back pain, but ignored it, I was NOT in labour. I was given a paracetamol and went to sleep. The next day I felt a bit better and assumed I was fine, but that night, 25 weeks and 6 days, after 4 weeks without water, and 4 weeks in hospital, I knew I was in labour. The pains were coming every couple of minutes, and they wanted to do a speculum to check my cervix. I kept saying it was an infection risk and I would rather wait, but they insisted. As they pain got worse, I finally agreed. I walked to the exam room and by the time I was there I was in agonizing back labour. They took a quick speculum and said they could see hair. I burst into tears, telling them that I couldn’t be in labour yet, I wanted to make it to 28 weeks. I never had the urge to push, so I think Gideon sat in my birth canal longer than he should have, with the nurses waiting for me to tell them I was ready to push and me waiting to feel the urge. Eventually I just pushed without it and Gideon came.
Gideon was born fighting, my little warrior. 1lb 15oz, he breathed by himself and tried to cry. I could just about see him as the SCBU (special care baby unit) doctors worked on him across the room; he was even trying to hit them away as they put the tube down his throat. They ventilated him and wheeled him away; he gave me a cry and a wave, as if to say he was “I’m OK mummy”.
I was able to see him a few hours later, he was so small and so beautiful I burst into tears. But he scored 8 on his apgars, he was a little fighter. He hit doctors who tried to examine him, but loved a good foot massage, and loved to wave his feet at everyone he met. We were allowed to stay in special accommodation for parents in the hospital, so my partner and I could visit often. We stayed by his side for hours on end.
He came off vent onto CPAP in 2 days – amazing for a baby they said had no chance of even breathing, and I got to hold him twice. But he started to struggle on his CPAP and went back on to vent after 30 hours. On day 2, he had a huge (grade 3) brain bleed, and seizures, but carried on fighting. He had a PDA in his heart causing blood flow problems, so they decided to give him medication to fix it. That night was the only time he ever pulled out his on IV line, somehow he knew something we didn’t know…that medication was going to kill him.
His PDA closed. The doctors didn’t confirm it, but we think the blood rushed to his brain and caused an even bigger bleed, and he started getting really angry. And at this time we didn’t know why, he pulled his own ventilation tube out and refused to wear CPAP, they had to sedate him in the end and put the tube back in, during this procedure his heart stopped and they had to resuscitate, they tried and tried, but his heart had stopped. They decided enough was enough and stopped attempts, it was then he suddenly came back to us, his heartrate came back up and he began to breathe. He was living up to his name.
He started having what I suspected were seizures again, jerking motions that didn’t look right. The next day it was confirmed…seizures. It took 2 types of sedation to stop the seizures, but his oxygen requirements were climbing and his sats dropping. Scans showed his bleed had worsened fast, covering both sides of his brain, but still he fought.
2 days later his sats were in the 70’s rather than 90’s his ventilation was on maximum support without bursting his lungs, they told us there was nothing more they could do for him. He was hypoxic, he was so swollen he couldn’t open his eyes, but he remained stable so we went to get some much needed sleep. The next morning, we called down to find he was having yet more seizures. We rushed to his bedside, it was awful to see him suffering so, he was having terrible seizures, constantly fitting, and was on a third type of sedation, but he wasn’t responding. In my heart I knew he wasn’t going to make it. I begged the doctors to tap his brain to relieve some of the pressure but they refused, saying it wouldn’t help and would only cause more suffering. I called the priest for his last rites, and wept as I held Gideon’s tiny hand, and my partner rested his hand on his head.
I spoke to Gideon and told him if he was ready to go then it was OK, and to drop his oxygen sats below 70 and we would understand that it was time. But I also begged him to carry on fighting. As soon as I said this his sats began to drop. I knew it was time. When they hit 69 I looked over at my partner and we silently agreed that Gideon was sending us a message, he was ready if we were. We couldn’t force him to suffer.
Then, with my closest family around me, my partner told the nurses to remove his ventilation tube, I burst into tears as they prepared him and put him in my arms.
For the first time I could see his face without all the apparatus, and he was beautiful, he looked just like my partner, same cute nose, my dimple chin and the most delicate fingers.
We sat in a private room, just my partner and I, holding Gideon in my arms and whispering to him that he had been strong, he had fought a good fight, he was my warrior, and that he hadn’t lost his battle: he had won, he had won his right to become mummy’s and daddy’s angel. It was OK to go. He died in my arms after 15 minutes and I held him for hours after, loving every second with my only child, and feeling the soul crushing despair of knowing I would never get to bring him home.
Now I walk with an angel on my shoulder, but with sorrow in my step. I am grateful for all the photos I have of him, we took hundreds every day, and the 17 days we got to spend getting to know him. I wouldn’t change anything I did: hanging on for 4 weeks, or choosing to ventilate him. I got to spend time with him. I got to hold him 3 times, twice on CPAP, once as he left this world.
My warrior, my fighter, I miss him so much. I walk past the room I had prepared for him, his nursery, I see all his clothes, the little dungarees, and the nappies and I weep. I weep for all that he will never see, the sun, the blossom on the trees, the sea, he will never play in the sand at our local beach, I will never see him laugh, I will never see him smile. And he will never feel the rain on his skin. But he will fly the skies with his angel wings, and look after his mummy and daddy until the day we get to hold him in our arms again.
Victoria blogs at http://tinyglimmers.wordpress.com/
She can be contacted at Vkgregory@gmail.com