Oliver and Joseph’s story

May 26th, 2009 by Matt & Joanna Froud

We underwent IVF in September 2008.
After all the treatment treatment, my wife produced so many eggs and her ovary’s were so swollen that the doctor advised us to only put back one embryo and not two as they normally would in IVF.

We were stunned to find out a few days later that it was a success and on top of this the embryo had split and we were pregnant with MCDA identical twins. We were told there was around a 2.3% chance of this happening and along with it we would have a very complex pregnancy, which would include many additional risks. We were so excited, but thinking back, how naive we were at this time…

As the pregnancy went on we were sent to Queen Charlotte’s and Chelsea Hospital in Hammersmith for fortnightly scans. At around 17 weeks, we had a scan and came out to the waiting room as normal while we waited for our notes to be written up. They then called us back in for a chat. They told us that one of the babies had a reduced amount of fluid around him and was around 25% smaller than his brother. To keep an eye on things they wanted to see us every week for a scan from now onwards.

We went home very worried, but we felt we were in the best hands and continued to go for regular weekly scans. We also requested we were permanently transferred to Queen Charlottes’s as we were very unhappy with the care we were receiving at our local hospital and had much more trust in the staff at Queen Charlotte’s. Eventually we heard we had been accepted which helped reduce our worry a little.

As the weeks went on, the fluid reduced and the size difference increased. Both of the baby’s doplers were always good and their hearts and other organs seemed to be functioning well. At week 29, the size difference reached around 57% and it looked as the smaller baby’s growth had tailed off.

The doctors advised that we had a planned c-section the following Monday at 30 weeks and 3 days as he felt the babies now had more chance outside of the womb with the help of Neonatal Intensive Care than they did inside.

We went in for the c-section on Monday 27th April 2009. The c-section went extremely well and both our boys were born at 12:29 & 12:31 respectively. Oliver weighed 1400 grams and his brother Joseph just 635grams! We were very worried, especially about Joseph, but we knew we were in a great hospital, all the staff had been amazing and if anyone could help then we were in the best place.

In the first few days, both boys seemed to be doing very well, Oliver was obviously much further ahead of Joseph due to his size. Then 6 days after birth Joseph developed NEC. It was a very severe case, his bowel eventually perforated. The doctors arranged for a Neonatal Transport team to take him to Chelsea and Westminster hospital for surgery, but he was never stable enough to move, let alone be operated on. We had to accept there was nothing anyone could do for our little man now, we gave him lots of cuddles before asking the doctor to remove his breathing tube and he eventually died in his daddy’s arms at 15:05 on Monday 4th May at just over 1 week old ;-(

We were both devastated, but we knew we needed to stay strong for his brother Oliver. Oliver was doing really well, his feeds were being gradually increased and he managed to move out of intensive care and into the special care baby unit that night, so we didn’t have to go back into the high dependency unit after Joseph’s death.

We lived about an hour and a quarter from the hospital, but we visited Oliver daily. Along side this we also had to get on with registering the births, Joseph’s death and all the funeral arrangements. A few days later I developed a throat infection and had to stay away from the hospital for a few days, but my wife visited Oliver every day. My wife then developed Mastitis in her breasts and was in agony for many days so felt unable to visit for a few days. I eventually got over my throat infection and managed to visit Oliver on Tuesday 19th May, the day before Joseph’s funeral. I had a wonderful day with him, the nurses were saying how well he was doing, he was the top baby in the nursery at the time!

The day of Joseph’s funeral came. It was extremely upsetting, be we thought we gave him the best send off we could. We finally arrived home that evening and both burst into tears. An hour later we received a call from the hospital to say Oliver has been sick twice in the last few hours and wasn’t very well. They told us not to worry too much, it wasn’t anything major, they had stopped his feeds for the time being and were keeping a very close eye on him. They suggested we got a good night’s sleep and came in in the morning. We were so shocked as we began to re-live Joseph’s death. We decided to go straight in and we arrived at about 10.30pm that evening. He looked like a different baby, he was back in an incubator with all the monitors back on him, and his tummy was distended just like Joseph’s was. We feared the worst, but tried so hard to keep positive. We were told that they thought he had developed NEC, our hearts nearly stopped, we couldn’t believe it, he was doing so well just 12 hours earlier, even the nurses were so shocked to see it happen. We were told it didn’t look as severe as the case with Joseph, but it they were pretty sure it was NEC all the same. They took regular blood gasses and x-rays of his tummy. The last x-ray showed the bowel had perforated, but they couldn’t tell how bad it was. Unlike Joseph though he was stable enough to be transferred to Chelsea and Westminster hospital for surgery and the surgeon was happy to try to operate and see if he could save our little man. It seemed to take forever for the Neonatal Transfer team to arrive. They had come all the way from Margate as the London ambulances were all busy. Eventually they arrived and made Oliver stable ready for his journey. We were told to get to the Chelsea and Westminster so we were there ready to sign consent forms and speak to the surgeon prior to surgery, so we made our way over. Oliver over took us in the ambulance and eventually we met up with him at the other end.

The surgeon spoke to us and explained all the risks, but he thought he was in reasonable shape for his condition and would stand a reasonable chance of survival. They then took him down to theatre to prepare him for the operation. We said a quick goodbye to our little man and then we went to have some dinner as we knew it would be at least 2 hours before we would be able to see our little man again. We returned from dinner and went back into the parent’s room and waited for the news. Eventually we noticed the surgeon arrive back. He was talking to someone outside our room, but we could tell by the look on his face the news was not going to be good ;-( He entered the room and sat down with one of the consultants. He told us he was very sorry, but when the opened up his tummy, his entire small intestine had been destroyed by NEC. Removing it was not an option; he could not survive on his large intestine alone. We just couldn’t believe what we were hearing! He said they had stitched him back up so we could see him for as long as we wanted before they eventually removed his life support. Myself, my wife and his grandparents spent time cuddling our little man in his last hours. We eventually decided it was time to let him go and we asked the doctor to remove his breathing tube. He was still on morphine and very sedated, so could feel no pain. I continued to cuddle him until he finally slipped away to be with his brother up in the stars!

Now, 36 hours later we are still completely devastated and will be for some time to come I can imagine. We just cannot understand why life has been so cruel to us. To a degree, we had sort of come to terms with loosing Joseph as he was so small and we believe he had given up his life to help his brother survive and thrive. But now Oliver has died we just don’t know what to do, where to turn. It is as if our future and all our hopes and dreams have all died along with our boys!

We like to think that Oliver just missed his twin brother so much he wanted to be with him.

Although we get some comfort from knowing they are now together, we still cannot describe the desperate feeling of loss we both have in our hearts. It is currently unbearable.

If anyone wishes to get in touch we would love to speak to them. Maybe we can provide each other with support in our times of need?

I will also be trying to find out more about research into NEC. We have already raised over £2,500 for the Neonatal Unit at Queen Charlotte’s, but we would love to find a worthwhile research project which we could raise some money for to try and help to ensure another family does not have to go through this devastating loss again…

All our love,
Matt, Joanna and our little stars Oliver & Joseph xxx

9 responses to “Oliver and Joseph’s story”

  1. christine says:

    Dear Matt and Joanna,

    I am so very sorry for your lossess. I can’t imagine this trajedy happening not once but twice. I really don’t know what to say. Your losses are so very fresh and raw at this time. What you are going through cannot be described. In some small way I can relate to your story as we lost our little Patrick at 19 days old in 2007. It was the worst experience in our lives. I have to say that as time goes by the black cloud does lift little by little. Every day be kind to yourselves any way you can. Be around loving people.


  2. Cris rodriguez says:

    Losing a child is hard. Losing a child the day you lay to rest another is heart-wrenching.
    I lost my princess Anastasia July 7, 2008. To this day it still hurts, but I remind myself that she is ok. Better to let her be my guardian than to be selfish and keep her here against her fate.

  3. Danielle says:

    I just had to right to you to say how sorry i am of your lossess and what you are doing regarding nec and research is wonderful and so very brave. We were so lucky that our wee Emma survived NEC as a few of my hospital friends babies didnt and the more that can be done to prevent this devastating infection the better. Your precious boys are in my thoughts and prayers.

  4. carol wood says:

    I wanted to say how desperately sad I was to read your story of the loss of your two darling boys. I lost my baby boy four years ago and it was a very dark time made bearable by small things like the kindness of others and family and friends. I wanted to tell you that there is hope – after a total of 9 IVF attempts I now have 1 year old twins making the house loud and alive. I wish you strength and love at this time and hope you can look forward to a different and better future.

  5. sara says:

    I am so sorry to hear about your losses. I had my little boy back in 2006, who was born 6wks prem and by c-section as i had pre-eclampsia tto so was very poorly. I din’t get to see my baby till 3days after. However as i was getting better, my baby developed NEC 5 days after he was born. waiting for a transfer to a hospital equipped to deal with my son, seem to take forever. Especially when i also was so ill also. They told me he urgently needed to be transfered as they suspected he may ned surgery. We eventually were told he would be sent to St Marys in Manchester, 20 mins drive away. I had to be transfered to the same hospital as still very poorly too.

    We were then told at 1am in the morning he had NEC and it had perferated and he had less than 1% of surviving! My whole family rushed up and we all went in 2 at a time, to say our goodbyes. we were told in the room to sign the consent form. we both couldnt breathe, talk or even stand up due to how emotional we oth were. I couldnt even se the pen or paper when i had to sign, what i thought was my babys life away! The worst feelings ever.

    He was then taken to theatre, our whole family were kindly put up in the family rooms, where we sat and waited. Although, i was still officially a very poorly patient, but at this time refused any treatment as i was loosing my baby! So they soon had to stop arguing with me. Hours past, then we heard people in the corridor.

    He was being brought back to intensive care, we were told to wait in a family room where we were told they had operated and removed 3rd of his bowel which had died and he had stomas. To let the intestine try and recover and see if at some point thhis could be reversed.

    I am missing out so many details, pain, emotions in between all of this. However i am sure you can imagine what you feel when your baby is so ill.

    We were finally allowed to see him. He went through so many ups and downs, infections, blood transfussions, long lines etc. In between being in intensive care, then high dependancy. Back and too for months and months.

    The stomas were not working as they had hoped so they operated to reverse them and only hope for the best as this was his last chance. So many times, the operation was cancelled coz he was just too poorly.

    Months went by again, we lived in the family rooms when they were free and never left his bedside. He was then allowed to be taken off the wires for a 10min break for us to take him in the hospital pram to the canteen. Wow, that felt amazing. Even knowing that might be the only chance we ever get to take him anywhere, but an incubator.

    He was then referred to another hospital, where he stayed a while. Few more operations, infections, long lines etc.

    Then transfered again to another hospital where we remained for another few months and specialised in bowel problems etc. we were in an issolation room for months. So far this had been 6 months of living with my baby in hospitals. I decorated his room and wanted to give him everything i could, always fearing the worst and he would never get out of hospital or even make it. I stayed strong and just hoped he would too. I new all the staff, cleaners,canteen staff, patients and other families. Who almost become part of your life, as nobody could ever understand what you were possibly going through unless you were living it or been there. Which i would not wish on anyone. However it does happen and i am determined to try and research in to this more. Are there any research groups?

    My litle boy eventually came out after almost a year and was back and too to hospital for years, doctors, dieticians. I had to order Special milk at my local chemist and feed every 3hours cause his bowels could not take more in one go.

    He is now 4 and is my shining star who i never thought would make it. He has 6 scars which i want him to be proud of as they saved his life on so many occasions! He is allowed to drink normal milk and food now. He just has very bad bowels, which may never get better. But a small price to have to pay considering what he unbelivebly got through! We still go to hospital appointments and he was the dieticians star patient too. In all the years he had looked after anyone, he said my son was an exception to the rules. To go from the worst extreme to a healthy little boy now brings tears to his and all our eyes. I am eternally grateful to all the hospitals and people who helped him survive and be there for me too.

    It was the hardest year of my life. But through all the heartache and pain he is still here today.

    I hope you dont mind me telling you my story, there are not that many people, infact none that i know who have experienced what we have. Other than some in the hospitals at the time.

    I just wanted you to know that there are a few that make it and i am so so sorry for your losses. But, the more people/hospitals are aware of these symptoms and the more research that can be done, the better. I dont want anyone to go through what you or i have ben through.

    Thoughts are with you

  6. Shaina says:

    I am very sorry for your losses. I had twin boys (Colten & Caleb) at 29 wks and 4 days (January 29, 2010). They seemed to be doing GREAT, although very tiny.The were rushed right to the NICU. 5 days after they were born, Colten took a turn for the worst, and had to be transported to from the University Hospital to Nationwide Childrens Hospital. The doctor had called us at home (mind you, I was still recovering from a c-section), and told us we needed to get to Childrens ASAP. We rushed there to find Colten on a ventilator and very heavily sedated. I FREAKED out.On day 6 of Colten’s life, We too had to make the hardest decision of our life and pull Colten off all the machines. He had ended up with NEC and went through 2 surgeries and there was nothing the doctors could do. The researcher of NEC from that hospital told us he had been researching that disease for 30 years and doesnt know anymore now than he did 30 years ago. Caleb was in the NICU for 66 days and is home and wonderful now (Almost 1 year old). It still is the worst feeling ever to lose a child, I couldnt imagine not having Caleb. I wish you and your family all the best!

  7. Bev Dickinson says:

    My family are going through this right now.

    My twin grandaughters were born 13 weeks early on the 8/3/2011 and weighed 1lb 11oz each. They were doing so well. But were seperated to different hospitals in Yorkshire.

    On day 16 Maddie the eldest twin got NEC. We were told not to read anything about this disease on the internet but obviously that night we did, and we were still quite hopeful that at worse she may have to be operated on.

    The next morning on day 17, her parents went in to see her and were told the devastating news that there was nothing they could do.

    We christened her that afternoon and she died later that day.

    Maisie her other twin at another hospital in Wakefield is now over 2 months old and weighs 2lb 14oz and has been on formula milk for 1 week (we know this is a factor in Maddies death) and was doing fantastic until yesterday when she also diagnosed with NEC.
    We are yet again devastated and they only hope we have is that they caught the disease earlier this time and the antibiotics work. The only hope we had to help us get through losing Maddie was the fact that her twin sister was doing so well and now she could also be taken from us.

    My heart goes out to you…how does anyone get through this?

  8. Angelika says:

    I was 24 weeks pregnant when give birth to my son Jonathan in Princess Ann Hospital in Southampton, 100 miles from our home, he was tiny 765 g. Jonathan was doing so well. He meant to be transfer to Royal Alexandra Childrens Hospital in Brighton (closer to home about 40 miles. I had a phone all from hospital and been told that Jonathan is very ill and that we should come to hospital.
    NEC. IWe could not believe what Dr’s where saying. He went trough operation. It was successfull but that was just the beginning of our journey. Jonathan is 14 months old now but he spent all his life in hospital. He had about 10 operations all together which left him with short bovel syndrome.
    Dr’s trying establish his feeds but his bowels just stop working at some point and we are back again to the beginning. Jonathan is surviving on TPN. He had line removed twice due to infection.
    Its just so frustrating. He is so happy and beatiful. Everybody ador him!He have such a great care in hospital.
    I just want my baby home so much. We have doughter of five as well. Its horrible to leave him in hospital.
    I am worrien about his future. Im worrie about transplantation or long term TPN.
    Our son still fighting. We also will never give up. Its just so hard.
    Is there anyone in simular situation? How you dealing with this?

  9. Lorien says:

    In Feb 2009 I had an emergency C-section at 27 weeks due to preeclampsia.
    My little Elijah was born 1 lb 13 oz. I too received a horrfying phone call @ exactly 1 month of age. I had just been with him hours before as I spend every moment I could at his side. I was told to come back to the
    hospital as my baby was very ill. Words can not describe how I felt hearing the Dr.’s words I still do not know how I got there as the hospital is about 40 miles from where I live. While I took the drive sometimes 3 times in a day I got there in 20 min. this time. As I walked into the NICU some of the nurses who had taken care of him came right to me and were crying. I thought I was going to faint that was the scariest feeling I have ever had in my whole life. The Dr. began to explain to me that Elijah had NEC as he was going over everything the nurses were at each side of me I think they must have been holding me up. As I write this it seems like a movie I watched not my real life. My poor baby layed there helpless and because of the transfusions his whole tiny body was so swollen. It looked as though someone had blown him up. I was asked what my religious beliefs were and as I am Catholic it was suggested that I have Elijah baptized immediately. I was able to have a priest come that day and my family was allowed to all be in the NICU for the service. His bowel had perforated a couple of days later and he was rushed into surgery. Reading the other posts we were very lucky to have the surgeon right there in the same hospital. He was given an Ileostomy and had two stomas for a couple of months. I became quite proficient at replacing is colostomy bag. He had his second surgery to be put back together. It was a tough road the toughest road I have ever ever taken. And at the end that child went through countless blood transfusions, blew out PIC lines, a fratured femur, numerous infections, 2 surgeries, Osteopenia, Acid Reflux, and a spinal tap. Every day was both a challenge and a blessing he had good days and bad days. He is now 28 months and the light of our lives. I lost my uncle to a sudden heart attack a couple of days after Elijah got sick. I truly believe with all of my heart that his spirit was with Elijah thorugh all of it. He saved him i just felt it. Elijah is for the most part very healthy now. He does have digestive and bowel issues. If anyone has a child who has survived NEC and is a toddler or older now please let me know what issues they have had and any suggestions for diet. It is a little frustrating trying to figure this stuff out. He has been through so much and will have to undergo more testing in the next month. He has diahrrea most of the time and has recently started vomitting for no known reason. He complains of tummy aches and has a hardened distended tummy from time to time. i am told this could be due to scar tissue causing the intestines to spasm. I am hoping someone has some answers or suggestions for us. I have to say that the staff in the NICU at Kaiser hospital in San Diego was so supportive they really felt like family and I owe them everything for taking such good care of us.

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