Sylvia van Bruggen
Peripartum Cardiomyopathy Support Network
how to help
My name is Sylvia and I got badly sick giving birth to my first and only child who is now 5. I still feel angry and am looking for answers like many of you. I don’t seem to have gotten much further since then in answering them.
I am healthy now, have not seen a cardiologist for 3 years, after echoes showed my ejection fraction was back to normal. It did take longer for me to feel fit and energetic again, but I can not separate the effects of PPCM from those of Motherhood.
Only recently I have heard of this specific test from a befriended doctor who discussed some of the latest literature on PPCM with me along the poolside, and am now planning to request that test being done from a cardiologist as soon as I have found one in the new place we live in.
I wonder if indeed this test is more accurate and can confirm my heart having healed completely or not.
Like so many of you, I do want to have another baby and am struggling with the idea of pregnancy causing PPCM to reoccur, and the risk of death.
Wanting a home (water) birth back in 2001 (in the Netherlands which is having I think about 30% of all births at home) in the first place, the prospect of having to be under close medical watch and transpiring fear into my unborn would be un-ideal at the least. And yes I am already blessed with a beautiful daughter, and need to be healthy and alive for her. But also would really love for her to have a sibling.
We are looking into adoption, as to me it is an appealing idea, but a really hard course too, especially being a Dutch citizen under Dutch adoption laws (but now living in England, which might in fact make it easier; I have only recently started looking in to it, after spending much time finding out the American adoption laws and procedures these last 2 years when we lived in the US – where adoption usually is much easier and faster, but then again, not for Dutch citizens).
So we are back at looking at the risks with PPCM and the stories of other women who successfully had more children as well as those who did not recover (yet?).
This is my story as it happened:
I had a really good pregnancy, nothing out of the ordinary happening. I felt so happy every day, but do remember being tired. I worked part time and studied but both not too hard and stressful. Had I done so, maybe I would have been more obviously too-tired-to-be-normal, but maybe not (this is a story of many maybe’s and if’s…).
I had none of the excess water retaining that many of you speak of.
Just a couple of days before my due date I was still active and bicycling my way around Amsterdam, until a got sick. I mean just a cold and diarrhea. My midwife had me take a blood test in the hospital to make sure (to make sure of what I don’t remember or never knew, as I was really not too concerned, and just wanted to focus my energy on upcoming labor). The hospital now asked me to come back 2 days later for another blood test, as there apparently was a certain value that was off, but that was declared acceptable in the second blood test.
Unfortunately I can not name the substance (Americans seem to be much better at getting all the medical vocabulary out of their doctors as well as remembering them).
I wonder now of course if this was already an indication of either PPCM, or if it in fact was a virus that I caught that weekend before the birth, which affected my heart. If the latter were true, it would not make my case a peripartum cardiomyopathy, but rather just the bad luck of a viral cardiomyopathy around the partum, which would mean: no additional risk for a subsequent pregnancy. Well, this is not what cardiologists believe, but is a huge thing for me to question as you can imagine.
Anyway, let me stick to the chronological order.
I was released by hospital surveillance, after those blood tests and was going to go ahead with my midwife assisted homebirth. My husband and I had set up a rented birthing pool in our small apartment and took a nice bath in it together. After getting out of the warm water the evening after my due date, my waters broke and there was meconium in it. I immediately knew the midwives’ policy is to transfer you to the hospital because of that. I was disappointed but still excited over getting to meet my baby soon, and off we went to the university hospital, as the one around the corner unfortunately was full that night.
Because of the meconium the baby was immediately attached to a heart monitor, which made it impossible for me to walk around or take a shower, which I had wanted to keep doing to manage the contractions. I was also given an inducement because of the meconium, as they told me my baby might be at increased risk (whether this risk really is increased, is debated upon, I was recently told by a doula/midwife).
I am a person who never takes medicine, and I believe if I do, my body reacts very sensitive/strongly to them, and also I am starting to believe my heart of hearts at this point was getting angry or timid already and perhaps therefore vulnerable.
At once I started having strong contractions very frequently all night long. I did not like the OB repeatedly coming in to tell me I should take an epidural, but when I was exhausted and only dilated at 4 cm the next morning, after 12 hours of nonstop contractions, I lost courage and gave in when he said “take the epidural and you will deliver like a sunshine”.
I am telling you this because I feel these medications, any or all, caused what happened next, even if I had had undiagnosed PPCM.
The epidural made my heart rate go down to 40 bpm which was considered too low. In order to bring it up again, I got a little routinely shot of adrenaline (which was a mistake and should have been atropine, as I read much later in my file). Instantly things went wrong, I felt like hit by a bus, my body began tingling all over, I thought I was going to die, I softly yelled help-help. My heart rate had gone up from 40 to 190, with irregularities. My body –like a puppet on a string- threw up, and started coughing up blood. I got a stomp on the heart and another one. I have been told this is not being done anymore with new insights but in 2001 there and then it was.
My husband remembers the room filling with all kinds of staff and as the baby was in need, it was decided I would have an emergency C-section. I was hurried off and begged him to stay with the baby after it would be born and I would not be there.
I remember having to put my pregnant naked aching body from the bed onto the operation table myself, and then looking as wide-eyed as I could into the bewildered eyes of the anesthesiologist. It was clear to me nobody knew what was going on and I asked her with my eyes to take care of me, as well as praying for help.
I woke up all alone and asked for my baby. I had to wait and get tests done. I was taken to x-rays and had to sit up against a screen while I was still groggy and in pain from just being operated, as that’s what a C-section is, and was only interested in seeing my child.
The x-rays were done of my lungs as I had coughed up blood, and there was still no diagnosis.
Then after being brought back to the recovery room, and waiting for another hour, my heart was looked at with the transportable echo machine. I did not care. Finally after 3 hours my husband came in with our daughter all dressed and sleeping in a bassinet and I burst into tears of joy and sadness.
We never had any bonding troubles but I still feel that those precious first hours were taken from me. Who knows my heart would have been better off, had I had what it yearned for.
Doctors consequently told my husband I was very sick and had to be on the heart monitor ward.
As we sped through the hallways nurses urged me to breath from the oxygen mask they held to my face.
That night the OB whose name I did not even know came to my bed and more or less apologized.
I was on the heart ward for 3 weeks but never knew what exactly was wrong, or why, or when – in what condition- I would be allowed to go home. Doctors kept changing, and never once was the term peripartum cardiomyopathy coined, even though I did start asking questions and some more and some more. It was explained to me that my heart did not pump as it should because it was enlarged like a plastic bag.
Blood tests did not reveal a viral cause, but then again, doctors said, the virus might already have left my body. We can never be totally sure of that again, either way, although apparently the way that my heart developed and cured later was said to be typical of PPCM rather than a viral caused cardiomyopathy.
Of course I was out of place at the heart monitor ward but I wish nobody to be there, neither older people. When I was allowed up to take a shower, several days later, the monitor around my neck made the nurse run in the bathroom and urge me out of the shower right back into bed. I did not realize my heart was beating off the charts.
Luckily my baby was allowed to stay with me all day, as long as there was somebody else with me to take care of her. My mother and dear husband took turns.
I cried a lot and just wanted to take her home so she could be out of the hospital and so we would not be separated at night.
After 3 weeks my heart function was improved to the amount that I was allowed to go home, under the condition that I would get a referred household-help. Although there was an intake interview I never did, as there were none available. Or maybe me being such a young woman and perfectly able to have a friendly conversation on the couch, was not regarded a serious enough case, even though one of the doctors made a phone call to emphasize the urgency.
I kept on being tired and was crying from fatigue and what (grief, frustration) daily, for months on end, but at the same time I picked up regular life and enjoyed it thoroughly, being a new mom. I was allowed to breastfeed with the medication I took in the dosages I took, and although I was worried sometimes about the effects, I chose to trust in that, as I did not want to have that very precious thing taken away from us.
I was instructed to buy a digital scale and to weigh myself daily and to report back to the hospital as soon as I would gain any weight (fluids). I never did, only lost lots of weight and was very pale.
For check-ups, I changed to a cardiologist in the neighborhood hospital, and was pleased with the young doctor that I saw there.
He spoke openly and respectfully to me and I realized how much it matters to have a good relationship with your doctor. He gave me articles from medical literature to read for myself and I really appreciated that, and he was the first to even tell to me what name my illness was given.
I took lisinopril and eucardic, and on my own initiative, with the cardiologist’s consent, lowered dosages over the months and stopped around ¾ year later. Echoes showed a good EF and ventricle function then, and I was declared healthy.
The cardiologist did advice against becoming pregnant again, but said it was up to me and my husband, as another patient of his was going ahead anyway. I hoped to get into contact with this woman but my doctor found out she was not interested in contact with me as she was seemingly in denial.
The OB in the hospital that had admitted me had only said I should come in before deciding to become pregnant again, so their recommendations were quiet the opposite. Are OB’s as aware of what PPCM means as cardiologists? Or alternatively, do they have a better overall picture with the pregnancy?
I went for a second opinion from another cardiologist and he said the same thing as the first; “if you were my wife or mother I would say don’t get pregnant again”.
This was over 4 years ago.
Had I stayed home to give birth, would I have been in graver danger, possibly dead?
Or would the absence of all those medications have not made me to be as sick as I was?
My cardiologist explained this PPCM probably occurs more often than diagnosed, and if in less severe form, women heal again without ever knowing they had it. And get pregnant again.
I am glad to have found this website and the stories of other women.
It encourages me (after 2 transatlantic moves) to seek out a new cardiologist and to inquire about the newest insights, if there are any.
Furthermore, I do want to work through the anger and the trauma. As one of my best friends said before she died of breast cancer: with all the many treatments and everything, she did not get around to the psychological part, but she felt she had to. I wish I had helped her better there.
I wish all of you health and happiness, courage and love.