Accreta Awareness Month: Carol’s Story

“I have 3 girls 19,16 & 11 years old. All born very early at 27 weeks, 27 weeks, (angel baby boy, born asleep) 23+6 weeks & 26 weeks. So l knew it’d be a stressful pregnancy, just not this early. I was told at 5 weeks that baby had implanted on a previous c section scar & will probably have to terminate the pregnancy, I had to go back the following day for a scan with the consultant. He said it was just above & I could continue. since then I’d had many bleeding episodes. I was told at 9 weeks I had an extremely large cyst on one of my ovaries, they said if it hasn’t shrunk by my 12 week scan I may have to have surgery to remove it whilst I’m still pregnant. Well a week later I had large bleed with clots & my scan showed the cyst had popped & that’s what the bleeding was. I then had more bleeding. On the 25th July I woke at 1:45am to what looked like a scene from a horror film. I rushed to A & E they did bloods & kept me in. They did an internal & said that my ocervix was open & my placenta was poking through it (I had complete placenta previa) . They told me I was having a miscarriage. The following day it settled down a bit, I was constantly bleeding. I was on bedrest for the foreseeable future. I was told if I was still bleeding like this they’d deliver baby at 23/24 weeks. At 17 weeks they said I had to see my consultant every week. I had an infection because of the bleeding they didn’t know if it was a urine infection or an infection in my uterus so was put on antibiotics to cover both. 3 weeks later I lost a smelly discharge so they decided to keep me in. I hemoraged again & they saw for themselves how much I was loosing. They said I’d have to stay in now until he was born. I had a couple of scans & they suspected I had acreta, this is where the placenta grows through my womb. So they said I’d have to go to a hospital better equipped to deal with my complications & also my local hospital is only a level 2 NICU I needed a level 3. There was no beds or cot for one or both of us at any hospital close by so after 2 weeks I was transferred by ambulance to The William Harvey hospital Ashford in Kent. I hemorrhaged again & had to have a blood transfusion. This happened a few times. I was given a 15% chance of survival at delivery & told I was a ticking time bomb. I was given a MRI scan to confirm placenta acreta which it did. After 4 weeks it was decided that I needed to be transferred to Adenbrook’s hospital in Cambridge. So I was eventually after my consultant argued with ambulance control that if I delivered there I wouldn’t survive so needed to be transferred. I was transferred. I’d been having strong contractions for over 10 days so the ambulance journey made them worse. Less than an hr after arriving at Adenbrook’s hospital I said “these pains are getting worse” they said try not to worry because I’ll know if anything is going to happen because I’ll bleed due to the placenta previa. Then I said “I think I’m bleeding”. They lifted the sheet and the bed turned red & we could hear it dripping onto the floor. I hemorrhaged really bad. They pulled the emergency buzzer & everyone came running in. I was taken to theatre there was so many people I was like a rabbit in headlights. I think someone said there was 38 people in there. I’ve had prem babies before so knew this wasn’t normal. I had 3 anethatists putting in lines in my arms neck etc & a catheter was also being put in. The bleeding seemed to slow so they said hang on a moment but then I had excruciating pain so they proceeded. I suddenly thought oh crap my hubby doesn’t know please can someone tell him. They said yes. I was put to sleep and woke up on the close observation ward. I was in agony again I’d had many c sections so knew this wasn’t right. They gave me morphine the full dose it didn’t touch the pain, so they gave me ketamine a very strong pain killer. That didn’t work either so the anethatists asked for me to be reviewed by the Dr’s. They came & examined me. Then all of a sudden loads of clots came out n I hemorrhaged again. Just as this was happening my hubby arrived I was asking how’s my baby. It was gone 1 am at this point. I felt I needed to know he was ok as I thought I was going to die. They said he’s fine & doing very well. He’s a good weight 2lb 1oz. I was shocked for 26 weeks that’s really good. They got the bleeding under control. My hubby went to see our son & he took a pic to show me. I was desperate to see him but was too sick to go to NICU. The following morning I wanted to go & see him but had to wait to have more blood I’d lost 3/4 of my blood & although I’d already had a huge amount of blood in theatre I needed more. So I had that then I finally got to go & see him. He was adorable, so tiny the pictures made him look much bigger than he actually was. He had had a good night they’d had to give him 2 lots of surfactant but other than that he was holding his own. He couldn’t cope with being handled even touching his hand caused his heart rate & oxygen saturation to plummet dangerously low. So we just sat & watched for hrs at a time. I’d express tiny amounts of milk for him every 3 hrs day & night. He needed another dose of surfactant & he started to pick up. They even started him on milk feeds (0.8mls every 2 hrs), at last finally a purpose to all the expressing. He then got sick it was an infection in his umbilical line. A routine scan showed his liver had a cyst on it. They said his UVC line (his umbilical line) had been put in too far & scratched his liver causing a cyst. He had more antibiotics. These didn’t work but we found out that the UVC ha caused him to get a fungal infection. So he was put on anti fungal medication. We were warned that is could spread to the, kidneys (which it did), the spine or brain & cause meningitis (thank god it didnt). We thought he was doing really well. I woke up one night to express & dunno why but was really worried so I called the NICU. It was his Dr that answered & she seemed a bit short for a split second. Then I think she realised it was me. She asked me to come over as Ezra wasn’t very well. When I got there he’d had a large bleed on his lungs. It was horrible, he had loads of blood in his ET tube & a little was dribbling down the side of his mouth. He had to have a blood transfusion. By the next day he was stable. This happened again 2 nights later, then again the following night. Then he had a few days of doing really well. I went in one morning & he was very settled as my hubby said but I was a little worried. Then a couple of hrs later I said to his nurse that he was a bit quiet (by this I mean still, in fact he’d not moved a muscle in over 2 hrs). She said I was just thinking the same & have asked for the Dr’s to come & review him. Sure enough I was right. He had NEC (Severe gut infection that can kill the bowel). so they gave him 3 lots of antibiotics & another blood transfusion. He was really sick & even the nurses got a bit worried about doing his cares as he was so unstable. So it was minimal handling. After a few of days he seemed to be over the worse. Then we noticed he kept desaturating. So I had a chat with the consultant the next am & I said I was concerned he had a PDA (my daughter had one so I knew what the signs were). She said we’re thinking the same & we’re going to scan him. His scan showed a very large PDA, which they wanted to treat but couldn’t because of his NEC. (The treatment for a PDA is ibuprofen & they couldn’t give that to him yet till he’d recovered fully from his NEC). Then when he’d recovered enough they gave him the ibuprofen, this caused a very large bleed in his stomach & he had to have 5 transfusions of different blood products that night. During this time he was getting sicker because of the PDA, it caused 1/2 of his heart to enlarge because of all the extra blood it had to pump round & also his lungs were filled with fluid. One morning I was expressing in my room at the sick children’s trust house. When one of the girls said, mum NICU just called can you go up, something about his breathing tube has moved. So I went up not really understanding the dangers unfolding upstairs. When I got to the unit one of the parents were there holding the door open. I just walked through as cool as a cucumber & said thanks. Then I walked along the corridor, when I turned the corner I saw my hubby stood outside room 1 crying. I instantly legged it down the corridor shouting what’s happened. My hubby was saying “I thought we’d lost him. I thought he was gone”. At this point I felt sick. I poked my head in the door & ask if he was ok begging them for an answer. They said he’s back he’s ok. My heart was pounding. We were shown into a room. They offered us a cuppa which we refused (first time my hubby has ever refused a coffee). Once they’d stabilised him we could go back in to see him. He looked awful. I can only describe him as looking like ET when he was ill, his colour was that bad. His mouth was gaping open it was so distressing to see my baby like this. They gave him a blood transfusion to perk him up it helped a lot. By the next day he’d recovered pretty well. They put him on diuretics to help get rid of some fluid. He was struggling to get rid of co2 they tried everything. His consultant decided to put him on an oscillator ventilator, he tweaked the settings & set it up to a laptop. We had a meeting with his consultant at this point & we were told that he was now getting the maximum support they could offer him. That he was the sickest baby on the unit & that they wanted him to go to London for surgery to get his PDA ligated (which means close his heart valve with a little metal clip). So off we went on blue lights in the Ambulance with the ANTS team. His operation was planned for Tuesday. We arrived Sunday night. Monday they did his scans & xrays.This is when they told me, “we can’t wait till tomorrow as he doesn’t have till tomorrow, we don’t have any operating theatres available so we’re going to have to do it in a cubicle”. I was a bit shocked at this point especially when I asked when they planned to do it & they said in an hrs time. My hubby was in Ipswich still as we didn’t know he was going to have it on the Monday. So I had to sit alone. Not going to lie I crapped myself.
However he did really well & imediatly he started to improve. The next day we returned back to Adenbrook’s hospital, again on blue lights with the ANTS team. We also found out he’d had a bleed on his brain, the Dr’s had forgotten to tell us though for a week. We were a little cross but we were just relieved he was ok to be honest. A routine scan showed he had calcium deposits in his kidneys, a side effect of the diuretics. Other than this he was doing very well & they decided it was time to take him off the ventilator & put him on BIPAP. He managed it for the first time I was over the moon. At last we were getting there. In time he was ready for CPAP yes we were really cooking on gas. Then he went on to highflow. Unfortunately he only managed 30 something hrs n had to go back on to CPAP. This went on for a couple of weeks on off, on off. We were desperate to get him back to our local hospital as I had been evicted from chestnut house as Ezra was no longer critical & it was costing a fortune in fuel. I hated being so far away. That 2 hrs driving there & 2 hrs driving back was hard core. We were waiting for him to go down from 10L & 70+% to 6L & 30%. He didn’t do it but got really tired as he was being pushed so hard. So back on CPAP he went. I was devastated, yet I need not have been as little did I know he could now be transferred as CPAP was fine with the settings he was on. Yeh finally we got him closer to home. We had to get used to another unit though & a new set of staff. It was at this point I met Liz our Ipswich Bliss champion. At first I felt a little strange telling my story to someone without a child on the unit but I soon got chatting & Liz was awesome. I was finally told I could try to breastfeed my boy. The 1st time he knew exactly what to do. He latched on straight away. I cried with joy, the next time though he didn’t wake up. In fact he rarely woke up in the day. One night I was feeding him & he started screaming it turned out he had an ingunal hernia. It kept popping out & he’d require morphine for the pain. It was getting harder to put back in so they decided to send him to Addenbrookes for surgery. We were told it was very risky for him due to how bad his lungs were & that he may struggle ro get off the ventilation. He needed so we were transfered. When we went back to Addenbrookes he was very unsettled as he was used to us being in a room together for months & suddenly we were in a new environment (as he didn’t remember being there before). So if he couldn’t see me he freaked out. The staff asked if I minded staying in the quiet room so I’d be close by if he woke as Elsworth house is right at the back of the hospital in flats on the grounds. Of course I didn’t mind. He looked massive in the incubator. He only just fit in it. The next day it was operation time, they came for him. My heart was beating like mad, I kept thinking what if after all he’s been through I loose him now. Irrational I know but totally how I was feeling. His operation was to take 2 ish hrs. It was a very long 2 hrs. I went & had Burger King a nice change from the lasagne I’d been having every day, or it would have been had I not felt sick. I forced myself to eat it, telling myself I need to eat for my milk production. Everything centred around me eating as best I could so I could get as much calories in my milk (Ezra was & sill is struggling to put weight on as he burns a lot of calories breathing due to him being oxygen dependant). I got a call to say he was back on the ward & that he was still intubated. When I got there he looked so vulnerable & tiny. His eyelids were taped shut. Then he started to stir the Dr said she’ll be back shortly to extubate him. He suddenly went from out cold to wide awake & before his nurse could get the Dr he’d extubated himself. Luckily his nurse had his optiflow machine ready so she Pope him back on. I was so releaved as we’d been told he may struggle to come off the ventilator. Not my boy he was a star. I saw Wilf when I went to get my dinner (he was his consultant when he was very sick & he told us he’d need a lot of breathing support for a long time, he wasn’t wrong). He saw me & gave us a big hug, because we’d been through so much & he clearly cared a lot about us. You see some may find it unprofessional, yet on the NICU this is exactly how close you are. They are like a huge family of love & affection. The support is phenomenal, like nothing you can ever describe. These people have the lives of your most precious possession in their hands & they know it. We stayed another night then it was time to go back to Ipswich hospital. However the Ants team had 2 emergencies. So we may have to stay another night. However the Dr in charge made it possible as Ezra didn’t need his intensive care cot & they were full. So they needed his cot, so off we went, even though it was very late. It was a very poignant moment, as we weren’t going to the NICU. No we were graduating, after 178 days on the NICU on the 9th April at 11:45pm we were admitted to the children’s ward. It was both a very happy but sad time happy because it meant we were nearly ready for home but sad because we were leaving behind all of Ezra’s blue & green aunties (blue for the Ipswich nurses & green for the Adenbrook’s nurses). On the ward it was very frustrating, for months I’d been in charge of all his care, his oxygen etc & now I wasn’t alowed to touch it. We needed now to get him off his optiflow machine onto nasal cannula oxygen for 2hrs twice a day before he could go home. He was not liking the nasal cannula one bit. It felt like we’d took a step backwards. We were in a side room which made me feel he was a little more protected. Only this was short lived as a 1yr old with cancer needed the side room. I totally understood but even so I felt a little nervous. However for the 1st time in months we had someone to talk to. Then his community nurses came with his optiflow machine & an adapter for his prongs. We could keep him on his optiflow prongs & he didn’t mind it. Also the next day we were able to take him off the ward. Alone…. I cried all the way down the corridor & I didn’t even care that the pram we used was out of the arc. The 1st place I went was Framlingham Ward yes that’s the NICU ward. They were all so excited to see him especially as they’d not seen him since before his operation. Then a couple of days later Liz the Bliss champion for Ipswich came to see us on the children’s Ward. This time not as a Bliss champion but as a friend coming to see her friends baby. Finally she had a snuggle & to this day we keep in touch. She kept me going during the times I thought I was going to crack up in that cubicle & for that I can’t thank her enough. Well I had my training & it was time for out next discharge meeting (one of many we’d had & each time desperately wanting to hear the words your ready to go home). So off we went to the NICU…… “We are going home” that’s what we were told on Friday. 3 sleeps I was so excited. After 191 days in the NICU & children’s ward on April 22nd 2015 we finally got to take our brave little miracle home. Everyone was so excited for us even the parents of children we’d only just met. We were over the moon. They did ward rounds. I’d woke up with a stinking cold & his blood results came back something to do with his nutrofills, they said it’s to do with his immune system & that they’d have to keep a close eye on him (not sure how that’s spelt??), they said it’s to do with his immune system & that they’d have to keep a close eye on him. The Dr’s said we could go home OMG you have no idea how this felt it was official we were out of there, thank god. When we went it was so emotional I was balling my eyes out. We’d waited so long for this moment & watched so many others leave & finally it was our time. We called in to the NICU on our way to the car & again I was balling my eyes out. They’d seen so many of my tears over the months but finally these were happy tears. We went to Tesco’s quickly & then to Costa’s for a coffee & I fed him. Everyone was staring it was at this point I’d have to just block it out after all this is what we’d have to deal with now. This is our lives. We got in & videod the introduction of Ezra to our dogs they were so excited. Being home has been challenging, knackering but most of all rewarding after all what can be better than being at home with my baby boy & my family. He was on his optiflow machine until he was 3 yrs old when he was put on to CPAP overnight +2hrs a day with 2-3l of nasal cannula oxygen for the remaining time. I got his memory box out the other day, as I opened it I was over come with emotion which I totally didn’t expect so I closed the lid & had a good cry. I haven’t been able to open it since. I know I will but not just yet it’s too raw. He’s still got a long way to go but hes getting there slowly, as for me i had 12 months counciling for ptsd I still have bad days but I’m healing mentally slowly. I feel so lucky to have survived this awful condition & it helps knowing that so much is being done to ease awareness….”

Thank you, Carol, for sharing your story with us.

Please check out the National Accreta Foundation for more information.

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