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Hope for HIE – Hypoxic Ischemic Encephalopathy Hope for HIE – Hypoxic Ischemic Encephalopathy

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Remembering Oliver

April 19th, 2020  | Family Stories  |  By ASHLEY, HIE LOSS MOM

 

Following a beautiful, healthy pregnancy, I went into labour on the morning of December 7th, 2019. I woke up at about 5:30 am having some light contractions. I stayed in bed until about 7 am.

When we got out of bed, we made raspberry pancakes for breakfast – something I had been craving. Danyel had planned to do his usual Saturday morning sword training from 9-10 am. At around 8-8:30, things started ramping up. My contractions were getting stronger and closer together. However, the same thing had happened a few days prior so I was convinced this was a “false alarm” and I downplayed my symptoms and sent Danyel off to his training – he needed the exercise to clear his mind. I just told him to keep his phone close, just in case.

While Danyel was gone, I packed up our list of “last minute” items for the hospital – the majority had been packed for a few weeks. I ended up phoning Danyel at 9:55 am, telling him that I thought he needed to come home. By the time Danyel came home, my contractions were about 3-4 minutes apart and super intense. I called our amazing midwife and she said that it sounded like it was time to go to the hospital. Danyel had a record speed cold shower and packed all the things in the car and we were off.

When we got to the hospital (at around 10:45 am), our midwife did a check – I was already 5 cm dilated. We were going to have a baby. I was so excited but also scared. With the hypnobirthing preparation that we did, I was not nervous about labour. I was nervous about having a baby. Would I be a good mom? Did I truly have what it took to care for a newborn? Luckily – with labour intensifying I didn’t have time to linger on these thoughts.

Once I got into the birthing pool I immediately felt better. The discomfort of the contractions eased, ever so slightly, and Danyel and I worked through each contraction with the cues we had set-up in our hypnobirthing track. Reflecting back, it truly was a beautiful experience. I was able to work through the discomfort with Danyel’s help and guidance and spent a lot of the day in a deep hypnotic trance, so deep in fact that I couldn’t even speak. We were a great team.

Oliver was born at 6:41 pm after 9 hours of labour, not bad for a first timer! I will not forget the moment he was born. It was such a surreal feeling having him placed on my chest. I couldn’t believe that I was finally meeting my baby. After a few minutes, we unwrapped him from his towel to “look”. I was surprised to find that he had a penis. I was convinced we were having a girl. Oliver started off strong and healthy – he cried, he wriggled and he was absolutely perfect. He was so beautiful and I couldn’t even believe that I had made someone so beautiful.

Within a few minutes after Oliver was born, our midwife noticed that something wasn’t right. He had gone pale and floppy and wasn’t quite as vigorous as when he first came out. She checked his umbilical cord for a heart beat and it had stopped pulsating – which is unusual. At this moment she feared his heart had stopped beating but when she listened to his chest with her stethoscope he had a strong heart beat and a normal heart rate. She gave him some oxygen support to see if that would help him to perk up and when that didn’t work, we decided to cut the cord so he could be taken to the side and looked at more closely. When he didn’t perk up after a few minutes they called the on-call paediatrician who requested that he get moved to the Special Care Baby Unit (SCBU). Our hospital is small so we do not have a NICU.

Oliver was less than 20 minutes old when he was taken to SCBU. I can’t really describe what I was feeling in these moments. I was in complete shock – the joy of giving birth to a baby and the utter shock of him being taken away so quickly were such opposing feelings that I think my brain kind of just stopped. We thought it was going to be a simple problem that would recover with a bit of extra support. Sometimes if a baby’s first cry isn’t big enough, then their lungs will not inflate fully and this can cause them to have some issues. However, this usually recovers with a bit of breathing support. Oliver was placed on CPAP in SCBU but required quite a lot of oxygen support as well as the pressure from the CPAP.

The next few hours were a blur – as the doctors took care of me. I then had a shower and got dressed and was wheeled to SCBU so I could finally see my baby. It was about 8:45 pm, 2 hours after Oliver was born. He was off CPAP by this stage and seemed to be doing better, on his vital signs at least. He was still quite pale and not very active for a newborn.

At this time, the doctor thought that a large part of Oliver’s problem was that he was anaemic and therefore unable to circulate enough oxygen through his body. Again, we thought “great, something simple that can be fixed with a blood transfusion.” When Oliver’s blood results came back, he was only slightly anaemic – not as anaemic as we would have expected given how he was presenting. However at this time they also found that he was also “acidotic.” His blood pH was 6.7. It should be between 7.3-7.4. This was a very surprising and unexpected finding. At this time Oliver was diagnosed with HIE and the paediatrician liaised with a neonatal specialist at Waikato Hospital and planned to transfer Oliver there.

The treatment for acidosis/HIE is called “active cooling” and it can only be done in tertiary centres. The plan was for a helicopter to come and Oliver and I would go in the helicopter and Danyel would follow by road. Over the next few hours the medical staff started doing “passive cooling” with Oliver and did a really great job of getting his body temperature down. This helps to decrease his “metabolic demand” so that things like his brain don’t require as much oxygen – it basically helps give him some time. It was around 10 pm that the doctor told us about the plan to transfer Oliver. At this time, I was advised to go get some rest as it was going to be a long night – it would take about an hour for the helicopter to get there and at least an hour to get Oliver ready to go. In the meantime, he was in good hands. I left my baby to go get some rest so that I could be strong for him over the coming days, which at that point were looking like they were going to be rough.

Over the next few hours Oliver’s condition continued to deteriorate. He would take one step forward, and two steps back. Unable to sleep, I went back to sit with Oliver around midnight. At this time they were calling in the anaesthetist so that Oliver could be intubated. His breathing was shallow and his respiratory rate was low. They wanted to give him some more support to ensure he was getting enough oxygen circulation. When the anaesthetist arrived, we returned to our room to let them work on Oliver – space was a bit limited. We also learned at this time that the helicopter had been unable to land due to the weather and they were sending a fixed wing plane instead – it would be about another hour before it arrived. During the process of being intubated, Oliver was given a muscle relaxant to help with the process. This caused his heart rate to slow and he required chest compressions and bagging. Our midwife came in to update us and I think this was the first moment that I considered he might not make it.

I still didn’t know what to feel. There was so much happening inside my own body after giving birth and even though I understood a lot of the medical terms I found myself feeling confused. Why was this happening to my baby? He was perfectly healthy all through my pregnancy, we didn’t have any issues at all during labour… What is happening to him?

Just after 2 am the hospital midwife came into the room and sat on the edge of my bed. She told us that she had bad news. They had done everything they could for Oliver and he was not going to make it. I will remember this moment for the rest of my life. She was gentle and compassionate, and she understood that we were in shock. She said that the doctors would be coming in to talk to us in a few minutes. I am so appreciative that she was the first person who told us that Oliver wasn’t going to make it. For just a few minutes we didn’t have to think about any of the clinical or practical stuff that went with that, we were just supported and loved in the most awful moment of our lives. After a few minutes the doctors came in. The team from Waikato had been there for about an hour by this time helping our doctors and nurses. They told us that they had done everything they could for Oliver. Despite being as supported as he could be with ventilation, he was still continuing to get worse. They said that we could go through to SCBU and watch him be extubated and spend time with him, or they could extubate him and bring him to us in the room. We chose the latter.

After a few minutes, they brought Oliver to us wrapped in a blue hospital blanket. I don’t know how long he lived for after that because his heart rate and breathing rate were so low. The doctors and nurses gave us time and privacy to spend with our precious Oliver. They encouraged us to take time to cuddle him, kiss him and love him. They encouraged us to take photos, give him a bath and get him dressed. I am so grateful now for these moments, as hard as they were at the time. The memories we made and the photos that we took in this time are priceless. We also were able to FaceTime with our families and let them meet Oliver for the first and last time.

After we gave Oliver a bath and got him dressed, we had a little sleep as a family in the hospital bed (we had two pushed together). Oliver lay on a pillow in between us and we slept with our hands on his tiny tummy, or holding his hand or his chubby thigh. We only slept for about an hour and a half. We spent most of the next morning with Oliver – which was a bit of a busy morning. I had to have many blood tests taken and swabs taken, and we had to give a statement of everything that happened to the police for the coroners report. Since Oliver’s death was so unexpected, it becomes a coroner’s case. We also had the hospital chaplain come and bless Oliver. Just before lunch time, someone from the funeral home came to get Oliver. He had to go to Auckland to have a post-mortem exam and the funeral home was responsible for getting him to and from the exam. I was devastated when he left, but knew we would be able to see him again when he got back.

Now we had some hard decisions to make. Do we have a funeral or a memorial? What is the difference between a funeral and a memorial? When do we say our final goodbye and have him cremated? We DEFINITELY don’t want him to be embalmed… All these things to be considered when we should have been adjusting to life with a newborn. Where there should have been life, there was only death.

On Monday night, Oliver’s due date, when he got back from Auckland we went and sat with him for a few hours. I thought seeing him again would make me cry, but it didn’t. I felt at peace sitting in the funeral home, snuggling my dead baby. That in itself is a surreal feeling that I can’t totally explain. I guess I just felt whole when he was with me.

We went and saw Oliver again on Tuesday morning and made the decision to have him cremated that afternoon. We didn’t want him to be embalmed and we couldn’t really wait much longer. He was already starting to change and I wanted to remember him as the beautiful baby I gave birth to. We met the funeral director at the crematorium that afternoon and said our final goodbyes. It was the hardest thing I have ever done.

We spent most of the next week planning Oliver’s memorial. Which as hard as it was, was a nice distraction and provided something positive to funnel our energy into. Oliver’s memorial was absolutely beautiful and I am so thankful that we honoured him with such a special day. The little bubble who changed our whole world.

 

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