I waited all my life to have a child of my own.

Early February of 98, I found out I was finally going have a baby of my own. I found out by accident, I was only about 2-3 weeks pregnant. A few weeks later I experianced extreme morning sickness. I had to be put in the hospital. It was bad. But I was very happy to be pregnant.

NO warning..

I was going for my first ultrsound. I had my tape. My sister went with me (my husband had to work and could not get off work). The technician laid me on the table and put that cold gel on my tummy and began her work. She was having a problem getting his arm and leg measurements. So she poked and pushed on my tummy thinking the baby might be curled up asleep. After about 45 minutes, she decided to send me to a perinatoligist. At first I did not give it a second thought.

So the next day I went to the new doctor. They did another ultrasound she told us it was a boy , took some measurements and told us to wait for the doctor. He looked over the notes and asked us to go in to the consultation room.

He then dropped the bomb on us.

My son suffered from a rare form of dwarfism that affected all his bones including his ribs. He told us that if by some chance I made it full-term he would be stillborn from having a small chest cavity. His lungs would not have room to grow. He told us to come back in 4 weeks to verify his result. So we went back, and the result was the same.

We had some very tough decisions to make.

Do we abort, to try and induce labor early so that genetic testing can be done, or try and carry fullterm. I was told that more than likely I would miscarry him. Well, after alot of talking we decided to try early inducing of labor. I could not go thru another pregnancy not knowing if it would happen again.

So we went to the hospital. After 5 days he never came. So we tried to carry fullterm.

It was very hard to enjoy the rest of the prenancy, knowing what the result would be, but I wasn't sure if I would ever be able to get pregnant again so I wanted to hold my baby dead or alive. I would go to the monthly appointments and heard his strong heartbeat which gave me some hope that maybe they were wrong. I suffered some normal but severe complications.

Taking care of my unborn baby

After a procedure was done to remove some amniotic fluid, he could not swallow the fluid because his chest was so small therefore it kept building in my tummy. That night, I was getting ready to go to bed and guess what? My water broke. I was 37 weeks. So we went to the hospital. They had to induce labor and the pain began.

Labor at 37 weeks and a c-section.

After 26 hours of hard labor we realized he was not coming out the normal way. So, I had a c-section. I remember when they took my son out of me I began to panic, I knew he died in side of me . I thought to myself "he made it this far why could he not wait anohter 30 minutes". But I was reassured that he was alive!!!!! I never heard my son cry, but his heart was still beating strong. After they were done, they took us back to the room.

My son was still alive.

My whole family was there to see him and say hello and goodbye. I was very tired, dozing in and out. But for some reason, I perked up and my son was placed in my arms for the first time, alive!!!!!!He was the most precious sight I had ever seen. Then his heart stopped. My daddy was the first to hold him and his mommy was the last. How perfect was that?

Making a difference

Because my son made further than the doctors said he would, we decided to donate his body to Cedar-Sinai hospital for research. Hopefully my son's short life will make some type of difference with this rare form of dwarfism.

I miss him so much!!! I am so glad to have found SHARE.

I now know that I am not the only person going thru such a terrible experience. I know one day I will hold my son and I will get to hear his precious voice. I love you Jacob!!!!!

It has taken three years for me to sit down to write out his story.

Here goes, and I apologize for its length but so much happened in such a short life. In the fall of 1994, after almost 4 years of trying to get pregnant, I reached a point where I gave up on ever getting pregnant. We had had an ectopic pregnancy in 1991. I had lost one of my tubes, and we had been unsuccessful ever since. It was such a horrible and hard decision to make, and it was only worsened when I went to my OB for a routine yearly checkup. He told me that he could not tell my why or if I ever would get pregnant. (Let me interject here that I had also been on fertility drugs for most of those 4 years).

Pregnant at last

My appointment was on a Friday, and for some reason Sunday I realized that for the first time in 4 years, I had miscalculated when my period was to have started. I WAS LATE!!! I bought a pregnancy test that day and performed it the next morning. It was Positive!!! I raced to the store before my husband woke up (he had no idea I was late) and bought a baby toy to give to him.I woke him up, gave him the toy and said "Good morning, DADDY". Needless to say, it was the happiest day of our lives.

The pregnancy progressed along fine.

I was not concerned. I too believed that it was just a problem with the machine.

Concern - blocked urethra

December 20, 1996, my husband, my two stepchildren, and I drove to Dekalb Medical Center for my appointment. That very morning, I thought for just a moment- what if something is wrong with the baby, but I quickly dismissed that thought.

We arrived, my stepchildren waited in the waiting room while my husband and I went in for the ultrasound. The ultrasonographer began preparing my abdomen, and she asked us why we had been referred there. We explained that my OB wanted a more detailed ultrasound because he felt like he wasn't getting a clear enough picture. She proceeded to do the ultrasound and soon uncovered a problem.

The first perinatologist came in ( I will call him Dr. D) and began showing us the problem on the ultrasound. Our child (we didn't yet know boy or girl) had a HUGE bladder, NO amniotic fluid, and a blocked urethra. It was explained to us that the amniotic fluid surrounding babies is actually the fluid that babies release from their bladders. Our child's urethra (which is the tube that extends from the bladder out of your body and through which you urinate) was blocked. This resulted in the fluid backing up into the bladder and making it huge.

As our baby kept swallowing the little amniotic fluid that was produced otherwise, there was no amniotic fluid to surround our child. Dr. D stated that usually when there was this sort of problem, there would be other significant medical problems and deformities also. He stated that although our child was alive now, he could die at any moment. Then, he told us they would perform an abortion that same day if we so chose.

Options

My husband and I told him no, and asked if we had any other options. Dr. D. said we could drain off the fluid from his bladder to relieve the pressure via an amniocentesis. They would also run tests on this fluid to check on the baby's health. My husband and I agreed to this, and Dr. D. called in a second perinatologist to perform the amniocentesis because of our child's position.

The second perinatologist ( Dr. S) had to withdraw fluid from our child's bladder and avoid his spinal column which was in the way. Dr. S completed the procedure, and we left to go try to explain to our stepchildren what had gone terribly wrong. I remember calling my work from that appointment to tell them I would not be in. I barely got out that there was a problem before I ran from the building weeping.

Confusion

I remember that evening at my lowest of lows thinking that I could not go on day to day not knowing if my child was dead or alive inside of me. For a moment, I wanted an abortion- I had been told he would die, and I could not go on with the uncertainty of his life or death. I waited, I prayed. I got support from family and friends, and I got a phone call.

My health insurance company immediately appoints its patients a case manager when they are referred for high resolution ultrasounds. I was now considered a high risk OB patient even before the perinatologists had discovered a problem. Well, it just so happened that when we arrived home from the ultrasound, my case manager called me to check up on me. She had no idea what we had been through that day or that there was even a problem. I have never been one to question a doctor's opinion, but that day I did. I asked her for a perinatologist to go to for a second opinion.

Options and help

We received the name of Dr. P. We called immediately for an appointment, and we were told the first available was...almost a month away. I tried to be calm as I explained to the receptionist that I had just been told that my child might die any day--how could I wait that long!!!!!! Her name was Elizabeth, and I have nothing but the best to say about her. She listened, she spoke with the doctors, she got us in sooner.

I remember that my husband and I still had almost all our Christmas shopping to do. Here it was December 20th, we couldn't put it off. I still remember the pain of running into a very pregnant friend of ours who had no idea the problems with our pregnancy, and putting up a cheerful front. I cried so much. My OB was wonderful. I remember him calling my husband to check on me that Christmas week.

Mid January, I had my first appointment with Dr. P and Dr. E. They did an ultrasound and discovered that my child's bladder had once again become huge, and that there continued to be no amniotic fluid around him. My appointment was on a Friday morning I believe.

After the ultrasound was completed, we all sat down and THEY GAVE US HOPE! There was a new procedure being performed in other parts of the country. Dr. E, who had just joined the practice the week before, had witnessed the procedure and felt that it might be appropriate for us. The doctors carefully explained that there were still tremendous risks for our child and the good possibility that he could have medical problems or deformities. But they gave us something that we could do to help our child!!!

That morning, an amniocentesis was done again, and the fluid was withdrawn from our child's bladder, sent off for tests, and fluid was reinserted in the amniotic sac. We returned that afternoon for another ultrasound which revealed that our child's bladder had enlarged slightly again--but that was good. That meant that his kidneys were still functioning!!

Careful treatment

We returned for more ultrasounds and amniocentesis almost every other day. Altogether, I probably had about 20 amniocentesis. The ultrasounds and tests indicated that the kidneys were functioning well. Additionally, around this time is when we found out we were having a boy.

Boys with this problem have a better chance than girls. If girls have this problem, usually there are significant anatomic problems involved also. Since the kidneys were functioning well, it was decided to take the next step in this procedure.

First let me explain that with no amniotic fluid, the baby cannot grow and develop properly. Second, with no amniotic fluid, the lungs cannot develop. The procedure involved placing a tube (called a shunt) in the baby's bladder that would drain out into the amniotic sac. This would bypass the blocked urethra which could be fixed after birth. ( Side not here--the urethra was blocked only by a small piece of tissue that had grown in the wrong place).

Amniocentesis are not comfortable procedures. This procedure turned out to be painful. Because it was a new procedure, I am sure that much still had to be learned about pain control. I can still remember the struggle I had with myself to remain still so that they could save my child as I lay there in tremendous pain. The doctors tried for over an hour before they decided I could tolerate no more. We agreed to try again about a week later using better pain control for me.

More confusion and questions and success

It is now about mid February 1995. I remember calling Dr P nearly hysterical. I was so afraid that my baby would die because I could not tolerate the pain and lay still. Also, I was concerned that my insurance would not continue paying for this new expensive procedure if we failed again because I could not stay still. She calmed me and as I said, they came up with better pain control for me.

The day came for them to attempt the procedure again. Things were different this time. They placed a catheter in me so my bladder would not get in the way as it did before, and they gave me demerol for the pain. They attempted at least two times, and I can still remember the cheers and tears as Dr. E succeeded in placing the shunt in my son's bladder and draining it into the amniotic sac. WE DID IT!!!!!!!!

We continued to be monitored closely.

We were advised it might have to be replaced if our son pulled it out. We were told he might have problems with club feet from having been so crowded for so long (no amniotic fluid to float in ).There were other potential problems, but they all seemed so minor. OUR SON WAS GOING TO LIVE!!!

New Concerns

Early in March, Drs. E and P discovered that my son's kidneys had stopped working. Once again there was no amniotic fluid. His bladder was not huge. His kidneys were not producing urine. The kidneys had apparently sustained more damage than we had thought. You see, when the bladder was getting huge, the urine was backing up into the kidneys, and the kidneys were becoming damaged. Well, early in March, they failed to work any more. We still did not give up.

My husband and I consulted a nephrologist and a urologist to discuss kidney transplants, dialysis, and other possibilites/problems. We continued to have the wonderful support of my OB who recognized I think that we needed to do all this even though our son's chances were incredibly slim.

The biggest problem we had and no doctor could fix this was that our son's lungs had not had enough time to develop. When he was born, we were told he would not be able to breathe on his own. My husband and I considered the possibilities of long term ventilation and even short term ventilation with the possibility of taking him off life suppport if he had other serious medical problems besides needing dialysis and kidney transplants. We were so scared, and at the same time so willing to do whatever for our son.

Release

Easter, April 16,1995. I cried out to God that morning that I would never get to enjoy Easter with my son. He and I would never go on an Easter egg hunt together. It was so unfair...And a small still voice in me said what better place to be than with Me in Heaven. At that point, I let go.

April 17, 1995 I got a nesting instinct and did a weeks worth of laundry that morning between contractions. I went to my OB. He put me on a monitor. The contractions had stopped by then. I went on to work. Two hours later, I was in tears from the pain of these contractions. I kept telling my coworkers that they weren't contractions because I had just been to the doctor and he said I wasn't having contractions. I work across the street from the hospital where I would deliver. My coworkers wouldn't let me go home. My doctor called me back and sent me on to the hospital. When I was checked, I had dilated 4 cm in about two hours.

Let me make this clear, that my son was still alive. Even though his kidneys had failed, he was still alive. We heard and saw his heartbeat all night long. We struggled with the idea that maybe I should have a c-section to lessen the stress on our son. We never gave up hope that there might still be some small chance for him.

Matthew is born

A few minutes after 6 in the morning of April 18, my son Matthew Patterson McClure was born via a breech vaginal delivery. He weighed 4 pounds, 9.8 ounces. He had a heartbeat through delivery. They say he even had blood flowing through him when checked by the Neonatal Intensive Care doctor, but my son could not breathe. I still struggle that to give birth to my son meant his short life was over.

A diagnosis of anencephally - what to do, where to turn?

I have a beloved sister, 5 years my junior, that is pregnant with her third child and through a sonogram the baby is diagnosed without a brain. Of course, the shock of the news is so sad and makes my heart bleed with sorrow and remorse. How do you handle such a situation? How do you make the decision to keep on with the pregnancy? When do you tell your family and friends? What about your other children? So many questions one must have.

Elizabeth and Randy have decided to continue with the pregnancy

... and to deliver Kendra, give her their favorite girl name and cherish her memory in their hearts for the rest of their lives. They have made a decision that is extremely difficult and is questioned by many, but they have my support 100%!

My thoughts are with them daily.

If there is anyone who has dealt with this, I want to give my sister and her family as much support as I can give, 1500 miles away, and keep their spirits and hope up. I will be their for the birth of Kendra, and I will be there with my heart and in prayer for Kendra. Most importantly, I would like to hear anyone elses stories or thoughts on what meant the most to them while they also dealt with this similar situation. Your response is much appreciated and taken into heart!

So far away, but always in my heart!
Trisha

My husband and I had decided to have another baby with the other two we had. This was just before Christmas. I remember taking my temperature and telling my husband the ”day” would be the 8th of January. Indeed it was, and I waited a couple of weeks before doing a pregnancy test at my doctors.

I remember having mixed feelings, like I should be happy but I was only half happy. It was like something wasn’t right, even then but I didn’t realise it.

I was really excited to have the 18-week scan done. I guess our main concern was to decide whether or not we should ask the sex of the baby. Today, I realise that no scan will ever be the same but once again, another thing I couldn’t have known then. I had three different doctors looking at the baby, and I assumed they were really not good at working their machines. It never occurred to me that MY baby could be sick. No, not my baby, I was a healthy 25 year old with two previous and perfect pregnancies, how could ANYTHING be wrong with my baby?

I remember sitting in a small office wondering what kind of problems my baby could have? An extra finger? Down syndrome? What kind of operation will she need? The doctor was really sorry and announced that my baby had some kidney disease and would die at birth, if she even survived until then.

Then, I don’t really remember what happened. I know I saw at least three doctors who all told me different things and was given many choices but I left knowing I had to come back the next day to see a genetic counsellor and discuss terminations.

The next night was endless. Nobody could understand what the big” fuss” was about.” It was only a foetus; an abortion was the best thing to do for all of us. We could try again; we had other children…” I was devastated. My baby was alive and I loved her, I couldn’t contemplate having an abortion, just because some doctors I had never met thought she had a kidney disease… We decided to go on with the pregnancy.

The pregnancy was happy enough. We told our children that the baby was sick, that her body was broken but that her spirit was really happy and special and that she would go and live with Jesus. They seemed content with that.

I had scans and different things every couple of weeks. I had been warned that the baby would be fine until 30 weeks and that it might be a little more complicated then, as she was breech and had no fluid around her at all.

I still cherished every second of her being inside me. My husband and I, as active Christians, had decided to accept whatever was coming. We had faith that all was planned and that we would all be reunited one day, if she died.

The last time I went to the hospital, I understood that the birth would be complicated due to the baby’s position, lack of water etc and that she might be stillborn. I might have a caesarean, or that the birth would not be “easy”. Still, I was fine about it.

I guess I was really tired by then. Tired of the mental anguish, the physical pains, tired of the anticipation (such as organising the funeral of a live baby).

On Friday the 9th of August, I started having contractions every 15 minutes. I went to see a local doctor the next day and I was told not to worry, that the pains were linked to the complications of the pregnancy rather than labour. I went home and waited until Monday night without saying much. After all, I wasn’t in labour!!

Monday night was horrible. I went through every contractions wondering what I could do to help the pains, and I started thinking that I had a torn muscle or a broken bone in my pelvis. By Tuesday 13th early morning, I had decided that labour or not labour, I was going to the hospital that day.

My husband still left for work as we were so convinced that this doctor knew and that the baby wasn’t coming for another 4 weeks. I remember sitting on my computer chair feeling really frustrated, I couldn’t figure out why I was in so much pain, and why I felt like pushing (today, I don’t blame anyone for wondering if I am “normal”. I, myself can’t understand how I did not guess after having had two other babies.)

Anyway, 10 minutes later, Talina was born in my bathroom. She was born between my two other children asking for breakfast, in a breech position. It was the most memorable moment of my life. I delivered my baby myself. I feel so much love when I think about this magical moment. I wrapped her in a towel and called my mother who came right away. I delivered the placenta and wrapped it in another towel. Talina lived for an hour before she fell asleep in my arms. She didn’t look in pain, she looked peaceful.

She spent the next 48 hours at home with her family; we had organised to take her home previously. The following two days, my husband and I visited her before she was given a great party on the 16th of August with big helium balloons that got released for her.

If anything, even though she had already died, that week was a miracle. It was one of the happiest moments of our lives. We were holding our baby, our precious daughter in our arms, she was home with her family, and she slept in our bed. We were happy, a complete family.

On Friday night, everybody made comments like “ it’s over now”; and “you can move on” but really it’s when the nightmare started. She was gone! Suddenly it hit me, she had died 5 days earlier but to me she had just left that second. I realised her body had been squashed into a box and I had let that happen. The next few days were just as bad. I guess any parent who has lost a child will relate. Between uncontrollable tears, through to trying to grasp some air, I watched a piece of me die forever.

It’s been 3 months since her birth and death. We have done all we could to keep her memories alive. We took 250 photos, got a professional sketch done, professional photos done, kept everything that touched her, reminded us of her, I got a necklace, those you can separate and she was buried with one half of the heart and I have the other one on me.

I am amazed at how many other parents can understand…I thought I was the only one feeling like I wanted to die, and I still do sometimes. I guess it’s only been weeks. Even though the pain is unbearable right now, I would do it again. I would live through every second just to hold her again one extra minute. I know that families can be together forever. The time will come when we will be reunited again, and this day will be as magic as the day she was born.

I really would like to tell the parents facing the decision to go on with a pregnancy or to terminate it that it is not easy but it is surely worth it.

Thank you for reading our story,

Stephanie, Talina’s mama forever.xxxxxx