Our Little Man - Lost

This is the first time I have ever been on a forum, and to be honest I wish I wasn't here. But I have tried some other forms of support and so far they don't seem to really be much help, I think I just need an outlet, so hear we go..............

We recently lost our little boy Kobi Hunter, he was born on the 11 April 2010 at almost 38weeks. I will never forgot the day when we found out, the silence of the ob and the room whilst he was trying to find a heart beat until we knew that something was wrong. The whole weekend that followed was like a nightmare.

We have had 2 pervious miscarriages, and with Kobi I bleed for the first 12weeks so after the 12week scan we thought this time we had finally made it. After the miscarriages the doctors discovered that I have a blood clotting condition called factor five. I have only the single form of the mutation with no previous history of having DVT's even with flying almost weekly. Because I had no previous history they put me on asprin until I stopped just before 36weeks. At this stage we have not received any information about the cause, or even if they couldn't find one although the risk of still birth is higher with this clotting condition.

I miss Kobi and lost to know what to do with myself, life will never be the same. The love and grief you feel at the same time is just gut wrentching and at times especially at night I just don't know how I will get through. Life seems to go on around you, and I feel like I have stopped and watching it pass by.

I feel guilty that I did not know as they said that it could have happened up to 72 hours before we found out. Kobi didn't move alot throughout the pregnancy and being my first I had no comparison and being so close to the end people told me that movements are restircted beacuse they have limited space to move. I also feel huge guilt that I haven't been able to give my husband the children and the son he so desperately wanted, and also for our parents who were just so exicited to have another grandson.

Even though it was hardest thing I have ever done I am glad I could birth to Kobi and that we were able to spent as time with him as wee needed. Although it will never be enough, I still feel like I gave him up too quickly but after a labour of more than 24hours I was exhausted and just couldn't deal with the thought of keeping him with us overnight. I am so greatful that some of our family had the courage to come in and meet Kobi.

My family organised a star to be registered in his name and it is located on the Orion belt which known as Orion the Hunter which is very fitting. My husband got a tattoo and I have arranged some jewellery. We had balloons spelling his name at his memorial and let them go with our nieces and nephews.

We were lucky enough to have a private mid wife throughout the experience who was also a family friend. We were unable to bath him because his physical condition was not great and I did not won't to remember any more than I was already dealing with. Although I regret not being able to do this I know that our friend talked to Kobi and told him about us, his aunties and uncles, and nieces and nephews and sang to him, she was just amazing. She was also able to arrange plaster casts of his hands and feet that we will always have.

Okay I suppose this is long enough, I think I just needed to vent a little. However I would love to hear from anyone who has the same clotting condition about their treatment and doctors so that I can start to decide what I want to do int he future. I am not prepared to give up just yet?

Thanks to anyone who may find the time to respond.

Oh hun I'm so sorry that you had to go through what you did, no mummy should go home without their baby. I hope you can find the support you are looking for on BB, there are lovely people on here and I hope we can help you through this. RIP little Kobi xx

Just want to offer some massive :hug:
I have not been in your situation but there is plenty of ladies on here that will be able to offer you some advice.
Welcome to BB, im sorry it is under such tragic circumstances but i hope to see you around the forum soon :)
RIP Kobi xx

melk - I am so sorry to read about your loss.

Dear Melk, I am so sorry for the loss of your baby boy Kobi. I do not have any advice about the particular condition you are asking about but I just wanted to offer you :hug: Take care, you and your family will be in my thoughts.

:hug: Hopefully you'll find the advice/support you need here on BB :) If it wasn't for these ladies I'd be in such a different place after the stillbirth of my son in February... The love here is just massive :)

I can't help with answers about the clotting issue, although I was supected of having something similar and will probably also be put on asprin for my next pregnancy. But I hope you do get some soon :hug:

I'm so very very sorry :hug:

Sorry for your loss of little Kobi Hunter. (What a beautiful name..)

Thankyou for sharing your story.

I hope you can get the support that you so greatly deserve. xoxo

Melk - I am very sorry about the loss of your son Kobi. My DH and I lost our first child, Caitlyn, at 25w3d. I have Factor V Leiden and the heterozygous type too. I was told initially (by someone who in retrospect I should have ignored :wall:) that it should not increase my chance of stillbirth or pregnancy loss. But it did seem to for us. We had a number of miscarriages prior to Caitlyn and then her stillbirth.

I was treated with aspirin and clexane for the pregnancy of our DS until I became allergic to clexane (an EXTREMELY rare allergy :rolleyes:) and continued through the pregnancy on aspirin alone. Aspirin seems to be beneficial for the placental implantation and clot prevention, the clexane is more for the maternal risks although some of the research does indicate it has anti-inflammatory / immunosuppressive properties which my also be of use to those of us with complicated histories. Our DD was also successfully achieved with aspirin alone. I am hoping for the same outcome with this current pregnancy.

If you have any questions I am more than happy to try to answer them for you.

Welcome to BB :hug: albeit in the worst of circumstances.

Hi Michelle, thank you for your reply.
Your history seems very similar to mine so I was wondering whether I could ask a few more questions as I am know at the point where I just want information and understand what will happen next time?
Did you see a haematologist?
Is your current pregnancy with your history been classified as high risk? Are you seeing a Perinatologist? If so who?
Do you know of any OB's that specialise in this condition?(Mine is considered to be good but I am not sure he specialises in this?)
Are they planning on stopping your Asprin and is so when? (I was stopped at 36 weeks and Kobi really only made it to 37.5 weeks)
Have they changed your diet? Or put you on any additional vitamins?
Are they talking about putting you in hospital towards the end of your pregnancy?(They have mentioned this to me because my loss was so late, although I am not sure how this will help if something goes wrong how will they deliver the baby in time)

As you can see I have a lot of questions. Although we don't have any results yet I am craving information to understand what will happen next time, what tests I have to have now, what do I need to do before trying again to help the implantation. With Kobi I went with the flow of what they told me becasue after the first 12 weeks I had such a text book normal pregnancy until something went wrong and it was too late.

Also, can I ask how long you waited before trying again? I will be 35 at the end of this year so I don't wait too long because I think no matter how long you wait, it is going to be an anxious, scary and sad time regardless.

Thanks for your help

we have this condition in our family and our most recent pregnancy (my first cousin) was treated as high risk and she was monitored quite closely and took aspirin (i assumed the whole time, but cannot be certain, sorry).

I am really sorry for your loss of your beautiful baby boy Kobi; fly free little man xx

Sorry!!! I only just found this again. I am out at the moment but I will be back on again tonight to answer your questions.

Melk - Oh I am so sorry to hear your story. There really are no words. I only hope that you and your DH continue to find the strength to support each other. I couldn't help but tear up whilst reading your post. This has never happened to ME before however it just brings back memories of my sister who lost her second daughter at 38 weeks. It is so wonderful that your family were so supportive and had the courage to meet your son. I too met my niece Lily the night she came into the world sleeping and although at the time it was the most difficult thing I have ever done I know it was nothing compared to what my sister and BIL went through. Gosh life is just so freaking unfair. Hang in there chick.

Cheers Trea

Melk I'm so sorry your precious Kobi was born sleeping :hug:

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Sorry!!! I only just found this again. I am out at the moment but I will be back on again tonight to answer your questions.

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Hi Michelle,
Don't stress I actually have most of the answers to the questions I had I have been back to see the OB and also a specialist. It appears from Kobi's results that I had clots in my side of the placenta but there were also clots on Kobi's side. The report also indicated that his liver and kidneys were undersized for his weight and length so it appears that he did have a growth restriction even though he weighed 3.1kg and was 50cm long, they say he obvoiusly going to be a BIG baby.

I have to see a haemotologist and my husband is also going as well to see if there are other clotting problems with and whether in fact my husband may have it as well. They have put me on high does folate and vitamin D along with taking normal elevit for B vitamins.

They have said that future pregnancies I will be on asprin and injections, and will swap the injections towards the end with one that there is an antedote for just in case they need to deliver me. I will also be having fortnightly growth scans and blood flow scans, and later on fetal movement monitoring. There is a possibility they will put me in hospital towards the end due to the monitoring and if I get 36 weeks they will consider delivering me even though they would prefer it if I get 37, however there is a high chance I will be delivered even earlier than this.
They have also said that that I have a higher chance of clots forming again in the placenta since I have had this time, which scares me.

I would be interested in comparing the treatment to ensure that they doing everything possible.
Thanks for any info

Melk

I am so so saddened by the stillbirth of your precious Kobi. Like Teni, for me BB has been the most amazing and supportive place. I hope you find the support and some answers here.

I hope that you are starting to find your own way through the heartache and grief. Know that you are loved and worthy. Go gently.

In addition to asprin and clexane, some women with Factor V Leiden are prescribed heparin, via injection. However it does cause bruising, as it is an anticoagulant. It was suggested to me that clexane might be used in future pregancies, but it turns out it doesn't apply to me.

About trying again? It's a hard answer - first of all - having medical investigations done might be a factor, although you've had some results come in which is good, but ultimately you have to feel up to it, and you will know. After Amelia, DH & I wanted to try again immediately. After Sophie, we both needed time to heal. You will find a way that is right for you. It's a really scary decision, and to make it and then act on it take a lot of courage. The TCC journey is hard, but so is any subsequent pregnancy, as you know.

Sweetie - it seems to me that guilt might just be part of the healing process. However rest assured you have done nothing wrong, what has happened to Kobi and you and your family is nothing more than a sad sad tragedy. Please don't blame yourself, although I know its easy to do and analyse everything, but remember you are doing so with the benefit of hindsight. It's really unfair to do that to yourself. If you can, treat those thoughts for what they are, a part of your grief and healing and don't dwell on them.

Kobi is always surrounded in your love, and is with you now, always safe in your heart, helping you find a way forwards.

Thinking of you.