Monday, December 09, 2013

From a prospective parent !

This is a guest post , which provides a great perspective on what infertile couples want from their IVF clinic !

My journey so far is frustrating.   Several medicated cycles, 2 failed IUI (2 cancelled IUI), 1 IVF and 2 FET (one canceled FET). All failed. 

But that is ok. It made me a better person, more informed person. I am more patient, humble and more confident about myself now.  I now appreciate child birth as an absolute miracle of the nature.  I appreciate my mother and all the women with children or who are ‘Child Free’, by choice or by circumstances or their condition. 

Do you wonder why ‘Prospective Parents’ &  ‘Aspiring Mothers’ look for IVF doctors feedback online/talking to others/emailing fellow women to enquire/ meet many doctors and try to find out from anywhere they can know more? Get comments? 

And most of the bad or good comments are about how they were made to feel when they visited the doctor.  The ‘Aspiring Mothers’ note if the doctor was listening patiently? Were they made to wait long hours:  With other regular patients? Was the doctor empathetic?  Was he taking notes or the staff did all the talking? Remembered their names?  Was the doctor involved in the process always?  How did the doctor come across? As someone selling IVF or someone who wants to genuinely understand and help. 
I think, and strongly believe that it is because the situation in an IVF journey is not the same. Infertility is a condition. I am not ill. I am not sick. I am not a ‘Patient’.  And I do not want my IVF ‘Fertility’ clinic to make me feel like one.  In IVF journey ‘Aspiring Mothers’ are looking for a companion/ friend who will walk with them. The doctors treating infertility conditions are as unsure of the outcome as the one undergoing it. IVF Doctors are not infallible; they also depend on the miracles of the nature to take course once they complete what they facilitate. Can an IVF doctor today say that following a certain protocol will give predictable and definitive result? No. Both doctors and the aspiring mothers are an equal party to this semi – gamble.  There are hundreds of other natures’ processes of hatching, attaching, growing, and accepting the embryo that doctors cannot monitor or predict.  However some IVF facilities use better technology/ facility and pay personal attention to details and some do not. Some doctors have better understanding of the approach and some run directionless. Some doctors become part of the journey as friends/support and guide, and others just IVF practitioners.

It is not a gross procedure like  CABG ( coronary artery bypass surgery) where you bypass the arteries and the heart will pump. You check with angiography and watch the stent go and lodge itself and you can monitor the blood flow on the screen and Bingo!!  If you do not address a blocked artery, or get treated, you ‘Die’.  Or may be die early. You have a fractured bone and it is set in the cast, X-rays tell you if it is set, and if you do not fix it, it will cripple you or you will be in pain.  Step 1-2-3 and the result are predictable, expected, verifiable, with evidence and repeatable. Here whether doctor was smiling or not is not so much of the success criteria and neither is a supporting and understanding staff. 

So, I am not a patient, I am not sick and I am not ill!   Do not make me feel so. There is a need to change this perception.  I notice that most of my fellow ‘aspiring mothers’  dress well (make extra effort), put some makeup, are cheerful and smiling (this does not happen when you are waiting on your GP) , the women do so because they do not feel ill, do not want pity and want to fight this perception.  I am happy, healthy, cheerful person. I have a wonderful life ahead. I have lovely parents and a loving, supportive and a wonderful spouse. I have hobbies and a very promising career. I love my friends and I love to travel. I love dogs and run a lot of animal welfare activities. I love to cook and love to dance. I also want to have a biological child. But if I do not have a biological child, for the condition I have, I will not die. I will live my life to the fullest.  The society needs to start looking at childlessness and ‘Child Free choice’ differently. And the good starting point of this societal change is the IVF clinic. Where doctor and ‘aspiring mothers’ both establish a relationship of support, trust and respect, where my doctor knows me as a person and as an individual, and not as a ‘Patient Number’. 

It will bring about the change in the society and the acceptance of people seeking ART to help facilitate their journey. People hopefully will talk about their condition openly so that others can learn from them, or understand. It will help break this taboo. It will put the aspiring parents at ease. Take some of the stress away.  The expectation from the doctor and the IVF facility will be explicit, obvious and followed.

We are partners in this journey and hence my expectations from my IVF facility to treat me differently. 
This is my expectations from my IVF doctors and clinic.
1.       Please call the ‘Aspiring mothers’ by name. Never call them patients. Tell your staff to do so too.
2.       Please do take out time to talk patiently and listen patiently.  Do not act ignorant on the treatment history. Keep a file handy if you cannot remember.
3.       Do not make people wait endlessly. Their time is as precious as yours.
4.       Do not discuss a case in front of others. My information is private, personal and confidential.
5.       It is hurtful to say ‘you look stressed’. Yes, everyone with bloated ovaries will be stressed.
6.       Once you figured it out, give the plan in advance; tell me what you are planning to do. I have my days to plan and I will be comfortable if I know what is next and when I have to see you/ visit the facility. I can plan my work, life, and day and travel better.
7.       Keep my data, reports, history and information properly and make it available to me. I am not supposed to remind you my last doses and my reports. And all reports/photos of embryos/grade/details of eggs  should be provided to me.
8.       Tell me about the medicines and the interpretation of the reports. Do not tell me that I think too much. It is my body and I am taking medicines. I want to know.
9.       Please be involved in the process, end to end. My ultrasounds will give you important information, do not outsource it. The character of the endometrium lining and blood flow is also as important as the thickness.
10.   Do not run ART in batches.  It is sick and cruel. It is like a factory assembly line. It should be banned as unfair medical practice!
11.   Talk to me when I am in the OT. Do not talk about business. It is the most important day of my life. I am scared, anxious and worried. Talk to me. I am the center of the OT’s universe. OPK and ET is the most important part of my pursuit.
12.   Discuss and review the failed IVF cycle with me in detail. A failed IVF can tell you a lot about how you can do a better job for the next cycle
13.   I want to avoid sitting with pregnant women and women with babies. I do not dislike their sight, but do not want to be around with them when I am waiting for my follicles to grow.
14.   Do not say it is ‘God’s Plan’. This sounds better in movies, and not from the doctor. If that is the case, I would be in temples, praying and fasting instead of seeking medical intervention. I do understand biological variables that are not in your control. It is fine. God has better things to do.
I am now mustering strength to go for yet another fresh cycle; I know what I expect from my doctors and my IVF clinic. I will be visiting Dr. Malpani in next few weeks…… and may be make new friends along my journey.

To all others ‘Aspiring Mothers’, my very best wishes!

4 comments:

  1. Anonymous8:51 PM

    Wow! It seems that someone has spoken my heart. I am so sad to see there are many frustrating couples like this young lady and myself. Despite being well educated, having a loving husband and families from both sides, good friends around me, the so called " childless 7 years" has ruined my relationships, the desire to be happy and healthy. It has taken away all that I believed in my life. And most unfortunately the so called "infertility specialists" have contributed the most creating our life hell. She has said it right when she says this treatment is not like a heart surgery/fracture. No sure results, Docs can just say "sorry" but that " sorry" has actually drained us completely financially, emotionally and another many functions, festivals, holidays, child birth ceremonies will be again given amiss. I really hope the "infertility specialists" should be more sensitive towards us... " Aspiring mothers"( I loved this term. we are not patients.. that's true!!)
    Also I want to ask many other questions:
    1) I have been seeing a reputed doc from Mumbai coming to Delhi. He does ET/ER in batches and the women suffer. How can we stop it?

    2) This reputed doc from reputed hospital very blatantly refuses to give embryo photos and other details. Where can we lodge the complaint against this practice?
    3) WHY IS IUI/IVF NOT INCLUDED IN HEALTH INSURANCE?? We spend lakhs and lakhs of rupees on the treatment. Either there should be no recognition of infertility or docs or it should NOW BE TREATED AS AN EPIDEMIC DISEASE.10 years back, there were hardly any ADs of these clinics now they have mushroomed everywhere. Doesn't it show how much this problem has spread? and why? no one is looking at the cause!
    3) What is the qualification to become an " Infertility Specialist"? Is there any School/ college which specializes in this?

    I love u Dr. malpani!i have become more informed nd confident because of ur blog. I hope one day I will get treatment from u and that will be my last and final.

    ReplyDelete
  2. Doctors will continue to do what is in their best interests. They are happy to treat lots of patients - after all, this maximises their income !

    Sadly, patients underestimate their power and influence. Doctors cannot survive without patients - and patients do have a lot of collective clout, if they are willing to speak up and be assertive. This is the only way of healing a sick healthcare system !

    ReplyDelete
  3. Anonymous8:19 PM

    I am sorry to say that I don't ( and many others ) think many docs are "happy" to do what is best of the patients. Sadly, the nobility of this profession is getting lost and most unfortunately it has become a money spinning business for them. There is "cut" ranging from medicines given to the labs from where the tests have to be done. Do it, take it your cuts but at least treat the patients well! As an regular person to many hospitals for myself, my friends and relatives painfully encounter all these things on regular basis.
    tell me, where is medical complaint forum where we as patients can go?

    ReplyDelete
  4. While it's true that some doctors maybe crooked, patients need to learn to focus their energies on finding good, ethical doctors, so that they will flourish !

    ReplyDelete

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