Kate-Lynne van Tonder
In April 2009 we found out we were expecting our first child. We were delighted and couldn’t really keep it a secret- we were so excited! All seemed to be progressing fine, apart from suffering the worst morning (all day) sickness. At my 20 week scan we were told that our baby was measuring small and asked to go back at 22 weeks. We had two sonographers in the room on our return, who had a good look at our baby and seemed to be doing all the checks with the screen facing them and not us. Something made me feel uneasy, up until that point I had been pretty relaxed about everything. They let me go and empty my bladder as you probably are aware was a desperate need! When I came back in the room to be honest I can’t remember the exact words, but there we were told that our baby was measuring smaller than it should and there were cysts on the brain which was all very concerning. They told us they would like us to head to Aberdeen (sorry I should have mentioned we live in Shetland so there are no specialist consultants there) as they are classed as a low risk maternity unit, and so anything concerning means mothers are sent to Aberdeen for further investigation. I remember a numbness coming over me but also complete panic. We were asked to go up to maternity to wait and see when they could fly us to Aberdeen as they had hoped to send us that day. As it turned out there were no flights and we had to go home and fly down the next day. I genuinely don’t think we slept at all that night.
The next day we flew to Aberdeen and saw the consultant who examined the baby while we anxiously waited for her assessment. She told us the baby was measuring at the lower end of the normal scale and that they did not report cysts on the brain nationally as it was quite common and usually disappeared by the time the baby was full term. She said she would take us back in a month’s time to check how the baby was developing. We ended up back and forth visiting consultants having scans and an MRI throughout the remainder of my pregnancy. We were always told there were some things that could be concerning but it could be something or nothing. It made the last half of my pregnancy worrying whether our baby was okay. As she was breach it meant I needed to go to Aberdeen to have her, but given the concerns raised in Shetland which they continued to have throughout the remainder of my pregnancy, even with Aberdeen’s appearance to not be overly concerned, I had to go to Aberdeen to deliver.
I like to think she knew that was the safest way for her to get to us. We had a scan the day of the caesarean section and I will never forget the photo of her spiky hair the last photo of her inside my belly, safe and sound. We were told she would be around 6lb something judging from her measurements. Our first daughter Kate-Lynne was born on Friday 4th December 2009 at 3.46pm, I was nervous but knew we were in the right place, there she arrived pulled from her safe place by her legs which I could see from the other side of the hanging sheet that shielded my view. We were shown her and then they worked on her clearing her airways and there seemed to be some concern.
Someone said let her see her mummy and daddy and so she was laid on my chest peeping at us through one open eye. What joy that brought having her there, a whole 4lb 9.5oz and 44.5cm of perfection. Then she was whisked off to the neo natal unit where my husband went to see her after spending some time with me. He came back with a photo of our baby girl all hooked up to wires and C-pap.
I couldn’t visit her until the next day which was the longest night but luckily, they let my Etienne stay with me that night. I was starting to express so my milk would come in and everything was taken for Kate-Lynne. She was not suckling and was given a nasogastric tube. The next day we went to see her and managed to touch her but were not able to hold her, that did not happen until she was 4 days old. It was the most special moment finally getting to hold her in our arms. She was still on the c-pap but they kept it off for a moment so we could have photos with her. It’s so hard to remember timelines of things as it was a time of anxiety, worry, and hope. We were asked to sign various papers to consent to tests and whether results could be used for future research which we happily signed, with the view to finding out the reasons she was not quite breathing properly or feeding. We also felt of course we want to share findings if it could help in anyway.
When Kate-Lynne was a week old, Etienne was planning to head back to Shetland the next day as we were in the middle of buying a house, papers needed signed and we needed to move. We were cooking tea in the hospital accommodation and had a phone call around 6pm to come to speak with the consultant. While nervous I think we were both feeling a moment of relief, excellent they know what is the issue and now we can make a plan to help her get better or how we can support her- we felt optimistic. Not for one moment did we expect the words which were about to come our way.
We were taken into a room with 2 consultants and the most lovely nurse as all the nurses are, were there caring for our little baby girl. We were told that they would have waited until the next day but as the nurses had overheard of our plans for Etienne to return home the nurses had urged them to contact us. We were then told Kate-Lynne had Edwards Syndrome, there was some discussion over 3 chromosomes and trisomy 18, before they got to telling us that she was going to die. Their words were to the effect of she was lucky to make full term, 24 hours, 48 hours (we were sitting with her at a week old), before being told she would most likely not survive to her first birthday. They also went on to say that had she been diagnosed before full term they would not have intervened to help her after she was born, before taking us into a talk about DNR’s. As I am sure you can imagine we were in a state of complete shock, upset and already starting to grieve for our baby who was just a few rooms away. We both remember the doctor using medical jargon and telling us with so little compassion we just felt completely thrown and in disbelief. Thankfully there was that lovely nurse who sat and explained things after the doctor had spoken with much more care and compassion and doing her best to help us to understand what was being said. We were also told she had a hole in her heart and so her deoxygenated blood and oxygenated blood were mixing. We left and went to see Kate-Lynne completely heartbroken and with the disbelief that our baby was going to die as they had told us.
We phoned our families and close friends to tell them, Etienne’s mother made a plan to head from South Africa at the soonest availability, my mum got on the next flight down and my dad in America went online and discovered SOFT UK and Liz. The lovely lady who phoned me, arranged another parent to visit us at the hospital and come with information, and who was there when I needed someone to talk to. Forever indebted to that. The doctors came with medical research papers which had been too much to take onboard.
At about 10 days old we were told it was looking like she had full trisomy 18 but they had not finished all the testing, in the corridor of the neonatal unit. Another nurse came along and saved us this time telling the consultant how it would be more appropriate to take us into a room to discuss this information. A few days later we were then told she actually had mosaic trisomy 18.
Kate-Lynne continued to grow and build up her strength, I continued to express which helped me feel a little less helpless and she managed to come off the c-pap. We were given the opportunity to go to the parent craft rooms in the neonatal unit and then had her in our care. We learnt to change her nasogastric tube and at two and a half weeks old we were able to head home to Shetland. To take our baby home to die, as again from consultants we were reminded, and agree to a DNR which given the information we had been given we agreed to.
So we headed home on the 22nd December, through so much snow the taxi didn’t know if he would get us to the boat, and there were no flights due to the weather. But we did and after 14 hours we arrived home to Shetland where family and friends had pulled off the amazing feat of moving house for us, packing up one place and unpacking in the other. The solicitor who had been completely understanding had sent us papers to sign to complete the sale.
Our tree was put up and Etienne’s mum made it to Shetland on Christmas eve by some miracle given the horrendous snow that was all across Britain. She had to board a bus from London to Aberdeen and then get a boat to Shetland after a 9 hour flight from South Africa.
Initially when we got home Kate-Lynne did well, she had gained weight, and even at around 6 weeks old started to take a little from of a bottle although we did mainly feed from her nasogastric tube. We had regular visits from the Health Visitor and Community Children’s Nurse. Family came from South Africa and America and we had plenty of family and friends visit and meet Kate-Lynne. I made sure we took photos with everyone (including a photo with her name sakes my cousin Kate and friend Lynne which is really special) never knowing when it could all end and she would be gone. I took her to visit my work and to my friends, we went for a few walks when the weather was milder and not too cold.
In February we had a couple of visits to A&E and then up to a ward in the hospital. About three weeks before Kate-Lynne passed she started to have apnoea episodes where she would stop breathing for what felt like an age. I remember sitting on a phone to a nurse on NHS 24 and she was so lovely she just sat and talked to me as I sat and watched my daughter have moments of turning blue. I remember her asking if I wanted the doctor to come and I said I don’t think there is any point they won’t do anything to help we have a DNR. After a while, I literally have no idea how long the nurse said I think I will just send a doctor to check on you and Kate-Lynne. The doctor came some early hours of the morning and decided we should go into hospital. An ambulance came to pick us up and we were taken up to the ward. The doctors came and said they thought it was time Kate-Lynne went on morphine – to this day I am not sure the reasoning for it but they are doctors so you trust them. She continued to have apnoea episodes, family, friends and her health care professionals came to visit as we thought we were saying our goodbyes. Etienne and I had a private moment where we lay and cuddled her and stroked her face and said if she was ready to go then she could we would be okay and we loved her so very much. That evening we had about 8 maybe more people in Kate-Lynne’s room, we laughed, we cried, we made casts of her hands and feet. When everyone left we just stayed and tried to ensure she was a comfortable as possible and then again our little warrior proved she had her own plan as the next day her colour was back and she seemed to have stopped the apnoea episodes. We got home and were told to keep her on the morphine ans she also started to get O2 therapy again.
On the 12th March Kate-Lynne was very unsettled and would not sleep I had been up all night with her and was exhausted so asked my mam to come and keep an eye on her while I slept. I had come downstairs about 11ish and ate something before heading to bed again. I kissed Kate-Lynne and mam said she had been fine. Sometime around 12:30 (I think) my mam’s friend came upstairs and told me I had to come down Kate-Lynne had stopped breathing, she phoned an ambulance, I phoned Etienne who came home immediately. Another of mam’s friend was giving Kate-Lynne mouth to mouth. It was chaos, I was trying to tell one person we don’t need an ambulance and another to stop we didn’t want resuscitation. Etienne arrived and we agreed on no other measures. The paramedics hooked her up to the machine to check her heart rate that was not there and asked if we wanted them to do anything. We said no she had a DNR. Although we felt kind of bullied into the DNR in that moment we knew it was the right thing and time to let her go, there was a complete moment of calm. She looked so peaceful and while all that time thought I was too scared to have her pass at home, she knew better. That was the right place and we feel so lucky to have had the time we did. The paramedics left and said they would wait outside until the doctor arrived to officially pronounce her. We phoned and messaged friends and family and very quickly ended up with a house full where we all held Kate-Lynne and were together. The poor doctor was in tears and had an audience as he pronounced her. The funeral director was lovely and did not come and pick her up until about 7pm. He arrived with a basinet and we wrapped her in her baba blanket and said goodbye.
6 days later we had her funeral. The funeral directors again were superstars, they made her coffin but because I wanted her to have so many of her teddies and things they had to make her a larger coffin ha ha! I’m not sure what they thought but they never said a word and it was no trouble at all. She was laid to rest in the local graveyard overlooking the sea where Etienne and I, my brother, mum, granny, and Grandad (who now lies beside Kate-Lynne) all bought plots so we will all be laid together beside her, a one stop shop as we call it for family visitors ha ha!
We had our rainbow baby Dylan on the 21st April 2012, Lily-Ann arrived on the 2nd May 2014, and our surprise or bonus baby Magnus arrived on 8th May 2017. So our family of 5 to some which is really 6 is complete. We have photos of Kate-Lynne on our walls with the other children, we speak of her and also take them to her grave. She is still very much a part of our family and given it would be her 10th Birthday this year I feel it was time and I was ready to share our story with you and remember Kate-Lynne. SO much so I have now requested both my maternity notes and Kate-Lynne’s medical notes. I just feel I want to put timelines on her life and our time with her. I know certain times of the year which is not anniversary dates I can feel particularly low, upset, or can’t quite account for how I am feeling and I wonder if it corresponds to a date something happened within my pregnancy or Kate-Lynne’s life.