An Awareness Post for Hydrops Fetalis

When I started the series of What Women Want, it was because I felt that there were many women out there with a story waiting to be told, but do not know how. Often I was told “oh guest blogging is a great way to drive traffic to your page” or “You must start charging for this” or my favorite “Oh fab, now your followers will increase”. I never responded as always – What they think is exactly that – What THEY thing. I mean since when does increased followers indicate good work which is what I essentially believe in doing. I never had a “vested interest” so to speak. Which could be the reason why a stranger approached me with her story and heavily relied on me to tell it. It is very very personal and aims to RAISE AWARENESS for Hydrops Fetalis, which research indicates is caused by the Thalassemia gene – So actually, I do have a vested interest here I suppose!

Minakshi has had a terrible 2017 so far, she lost her one week old baby and almost lost her own life – TWICE. The condition her baby suffered was known to her only after her Eighth month of pregnancy, which was obviously too late to try and do anything. Read on for her story – I urge you to share it not because it “increases traffic to my site” but because it is a plea. From a parent to another parent. Let us try and save a life.

The story is in Minakshi’s words. I have only edited the grammar and flow. I felt that no one would be able to do justice to her story even though she maintained that she is not a writer.

It was a in the month of May 2016 when I realized that I missed my Periods.

I had been unwell and was suffering from diarrhea and was on strong antibiotics for two days so my husband thought that with the kind of medication I was on, chances of conception is low.

A week went by and I discovered some hardness in my breasts which was very worrying so forced my husband to take me to see a gynecologist. It was around 8 PM and my doctor said to so a pregnancy test. My husband I were so sure that this wasn’t the case. He said to the doctor “nahi nahi pregnancy nahi ho Sakti. Humne kuch plan hi nahi kiya aisa” (No No she can’t be pregnant, we are not planning anything)

But God had other plans. I took the test and it was Positive! I couldn’t believe it! I was Pregnant with my second baby! We didn’t know how to react.

Then our gynecologist broke the tension and said “Mubarkaa. You’re going to have a baby” Congratulations!!!!

Our mood changed and we got back home happy.

I am a recruitment professional with ten years of experience, and was working from home after the birth of my baby girl 3.6 years ago. I was enjoying this new phase since I was home, everything was going fine…I was good health wise, active, no BP problem, no diabetes…Nothing!!! All was ok, all scans were clear. That is, till the end of my Eighth Month.

We were nearing the “finish line” and the gynecologist said to have a scan so we could decide on the delivery date and we had opted for selective C-section. On 10 Jan 2017, when everyone was making plans for the new year so was I. We went for what we thought was a “formality” – the final scan.

We expected to hear what we have been hearing all along – ALL IS WELL! But to our shock we were told that our baby was suffering from Foetal Ascites or Hydrops Fetalis which in lay man terms meant that he (yes it was a baby boy) had water under his skin and body. We were both shattered.

We went into shock when the doctor said that there is no chance of survival for the baby. “Just pray we can save the mother” she added.

I was taken into surgery and gave birth to my baby. A healthy fully developed Baby Boy of 3.5 kilos. And before I had the chance to even lay my eyes on him forget hold him, he was rushed to NICU immediately after delivery.

Though the doctor had said there is no chances of survival, my husband fought for him till his last breath and God took him back from us on 17 January 2017.

Troubles did not end with me losing my precious baby to Hydrops Fetalis. I have suffered depression and constantly looking for the cause. I did not notice but my bleeding was not stopping even after a month of the caesarean. When it kept increasing, I went to another gynecologist for second opinion. She recommended an ultrasound and to our shock, I had a 18mm ×16mm piece of the placenta left inside my uterus which is highly infectious and dangerous. I have had to go through a DNC on an urgent basis. Here I was – fighting for my life – again – twice in a matter of a month.

We are still in shock. We do not know what happened. The little research we did told us that “Hydrops Fetalis” is a life-threatening condition that doctors all over the world do not fully understand. The only option available is abortion if Hydrops Fetalis is detected in an early stage. There is only 1 % chance of survival, and even then, the child does not lead a normal life.

It has been insane really. The only thing keeping me remotely sensible is the aim to spread awareness and maybe find out what happened to him. There is none now. After an extensive search, I found only one support group with parents who have lost their babies to Hydrops Fetalis. Doctors in the USA have finally started doing studies and research on this condition. Maybe someone, somewhere can offer a solution to this and we can save our next generations from this heartbreaking and life taking problem.

Please let us spread awareness. As I told you I’m not at all a writer, I’m not able to put my feelings properly.

I think she has very aptly put her feelings across. I have teared twice while editing this. Minakshi you are a brave woman. I am told that most infants with alpha thalassemia major are born with Hydrops Fetalis which breaks my heart that much more. I am so sorry you had to go through this and as promised you, I will do everything I can to help you spread awareness. Good luck and God Bless.

Minakshi is latest in this season of “What Women Want“, which now a proud contributor on Bizmomfinder as “Girl’s Got Everything“. Read the previous ones here.

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1 Comment on An Awareness Post for Hydrops Fetalis

  1. Meghna Dixit
    February 22, 2017 at 5:26 am (11 months ago)

    I am sorry but I had to stop reading. Then I started again, with more courage and tears in my eyes. As a mother, the loss of a child is the worst pain any woman can undergo. It’s cruel. I applaud you for opening up your grief to help spread awareness. I have no words but prayers for you. Hugs.