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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

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Tuesday, July 15, 2008

Meghan's birth story

When Meghan was born December 11, 2000, we saw immediately that she had Down syndrome; we had such a mixture of emotions. While we lie on the bed holding our new daughter, we could see the midwives who were in attendance of her water birth with their heads together whispering to one another.

Waiting and watching them, my thoughts and overwhelming sorrow were that perhaps Meghan would never learn to read well enough to read the baby book I brought with me to write in, something I did following the birth of all of our children. I thought of nothing else, perhaps from the shock, but being an avid reader, that was devastating to me.

30 minutes after her birth they approached us and apprehensively told us that they saw signs she had Down syndrome. I said "we know" and their jaws dropped. They then said that the reasons they thought this were a single Palmer crease on one hand, hypotonia (floppy), almond shaped eyes, flat facial profile, and other things I cannot remember. Tom began to sob, it was not the same as me saying it, and hearing from them broke his heart. I held him while I held our daughter and felt the floor drop out from beneath me, I was counting on him to support me through this, but I could see that it may be the other way around.

The midwives were so sad for us; we were a little scared because the midwife thought she heard a murmur when she listened to Meghan's heart in the middle of the night. She checked her heart every 30 minutes after that, turned on the lights to check Meghan's color, no one slept except our new daughter.

After that very long sleepless night, we got up and I got dressed. We quickly got ready to leave, as we were to go immediately to the doctors office to have Meghan examined more thoroughly. Our family doctor was called we were shocked when he refused to see her, he had never indicated that he would not care for her while I was pregnant, but he said he no longer took infants as patients. Thus began a stressful 3-hour wait while the midwives frantically called every pediatrician in town trying to find one who would see our daughter.
Finally, one agreed and we were told to report at 1:00, so we drove home to see our waiting children and let them see Meghan. Halfway down the road, I began to cry; something I had not done so far, Tom pulled over and we held one another once more. We stayed there a long time on Wyatt Drive, just crying, afraid of the future, afraid to move forward at that point.

After arriving home I walked immediately into our bedroom and sat in the glider rocker with Meghan, I turned on the lullaby music that I played while pregnant and rocked her. Our children knew something was wrong with their new sister, but they did not know about Down syndrome, their dad did not tell them over the phone. I sat with our oldest Fred and told him his sister had Down syndrome. He talked about a boy at his school with Down syndrome who was the butt of every ones jokes and my son was very sad picturing his sister’s future. He said no one was very kind to people with Down syndrome in HS.

Each one of the children came into the room while I explained her diagnosis, what I knew at that time at any rate. They held Meghan and they all looked as scared as I felt, we were all worried about her heart.

We left soon after and went to University Medical Center. After we found a place to park, we trudged up three flights of stairs to the entrance. I was beyond exhausted and this was the first time I did not have abounding energy after the birth of one of my children. Each stair seemed so high, each one such an incredible effort. (Even today walking up those stairs stirs up the memory of that day) I had given birth less than 24 hours before, I could not believe I was walking up those stairs with a daughter who had a birth defect; Down syndrome and a heart issue, my mind was racing, as was my heart.

Once inside we made our way to the third floor riding the elevator with a few other people. I remember not wanting to let them see Meghan, afraid I would get looks of pity or shock. We checked in and we waited for a while before we were called back to the room. Two doctors entered an older and a very young one. They examined our daughter rather indelicately and then gave her to me and I began to nurse her.

The older doctor told us he was sorry and immediately told us Meghan would never read or write, she could be severely mentally retarded, most likely would never leave home, and since we were older parents, after our deaths we would burden our older children with her for the rest of their lives. He recommended we give her up for adoption and forget we ever had her. He said we could just leave her there and a social worker would come and get her.

Being the type of mom that falls in love with her babies while pregnant, that had never even crossed my mind, I looked at Tom, and he looked shocked too. I remember telling the doctor very firmly that she was our daughter, we loved her, and she was staying with us, I can’t remember if Tom said anything, I am sure he did, but my focus was on the doctor and his shocking words. The old doctor left, I was so upset with him I could no longer look at him, the young one stayed and he began to go over everything we needed to do.

Seeing a cardiologist was one of them, so minutes later we went to another office and met the cardiologist who then performed an echocardiogram on our daughter and drew a diagram of her heart issues, she had a PDA, a possible coarctation of her aorta, a VSD and an ASD. He warned us of the signs of heart failure and sent us home. When Meghan was 5 days old she exhibited all of the signs of cardiac failure, she had just finished nursing and her breathing became labored, her face pale, her nail beds bluish. We got in the car a rushed to the emergency room. When we got back to triage, I had to tell the nurse that our daughter had Down syndrome, it was the first time I had said it to a stranger, I began to cry, and I thought Meghan was dying. We sat there in the waiting room while she struggled to breathe, her breath very audible, a condition called stridor. We were very upset that they were making us wait for so long. We sat there for over and hour and very slowly Meghan's breathing returned to normal.

We were finally called back, much to our immense relief, and we placed her on that cold examination table. The nurse placed a pulse OX on her big toe, and it read 86%, they repositioned the probe and it was 90%, and 5 minutes later, it was 97% so they assumed it was a bad connection and they said everything was fine and sent us home. We left with an uneasy flutter in our hearts, they did not tell us why she had the episode, and they had admonished me for over-reacting as well. We were confused and we were angry, but more than that, we were scared.

It was not until we saw her new cardiologist at 10 days old that he saw what I had been seeing after she nursed, her ribcage retracting, her color was ashen, he asked how long that had been happening, I said "Since birth" but I could get no one would listen to me about it. He quickly left the room and brought in a pulmonologist who watched her breath and said we needed a broncoscopy to make sure she did not have any atresias. The doctors talked about readmitting Meghan into the hospital for observation, but they felt she was better off at home and away from germs in the hospital, warning us that everything and everyone had to stay very clean around her because of her heart condition.

We left from there and into the hospital where she was admitted for the test. We called our children and told them we would be back later that evening, our sons were older, 23, 21, and 18 and were watching their brother Brian 14, sister Julia 8. Something they had done a lot as we saw a doctor nearly every day since their new sisters birth.

After sedation, we handed her over to the doctors while my eyes filled with tears; it is scary handing my tiny baby over for the test. 30 minutes later, they came out and told us Meghan has Tracheomalacia, or a floppy airway, and her windpipe was collapsing after she nursed, dropping her oxygen saturation below 90%. It was not a condition they could help with medication, she would need to grow and get stronger cartilage in order for the condition to resolve, they said it would take years and rarely a tracheostomy may be indicated. They also said she had reflux and prescribed two medicines to control it. The reflux was actually causing the stridor as the digestive enzymes were irritating her trachea. The stridor continued until she was over 2 years of age.

After the procedure she got very ill, the probe, which was a flexible fiber optic smaller than a spaghetti noodle fed through her nose and into her trachea and esophagus, had inflamed her trachea. The swelling dropped her oxygen saturation to 65%, she was put on oxygen and the 30-minute test became a 3-day hospital stay. As the swelling went down, she was weaned off the oxygen until she was on room air and no longer needed anything. They were going to send us home with a pulse oximeter and oxygen, but they were happy to see her breathing well on her own.

An occupational therapist specializing in breastfeeding met with me before we left to watch Meghan breastfeed. She determined that Meghan had an immature suck-swallow-breath pattern and asked how I managed to get her to nurse. I explained to her that I noticed she had no rhythm while nursing, so I would play her lullabies and pat her bottom while we rocked; she would suck to that rhythm and would feed well. It would take 5-6 weeks before she learned to do this on her own, but she loved her rocking chair. She was weighed twice a week to be certain she was not failure to thrive, but gladly she gained weight steadily and did not need supplemental formula.

We went home on Christmas Eve, and frantically finished shopping for our other children that afternoon, so much had happened and the holidays snuck up on us, thankfully the boys set up the tree days before. That Christmas was bittersweet for all of us.

We visited with the midwives for my post delivery check up in January and the midwife asked if we were keeping Meghan, she said they were afraid we would give her up. When we said of course, she was staying with us, she was our daughter, and she was visibly relieved. She looked Meghan over, asked about her heart, but that same sense of sadness, of pity, was still present, and also something that felt like guilt.

I had no prenatal screening for Down syndrome you see, they had encouraged me, sometimes harangued me to get the tests done. As a mother of "advanced maternal age”, it was standard to get amniocentesis, but I refused. I was afraid the amniocentesis would hurt my baby, as indeed I had a 1 in 100 chance of losing her to miscarriage if I had the test. I could not take that risk. We did get periodic blood tests and ultrasounds, which would not harm Meghan. Still I had an uneasy feeling during my pregnancy; I kept telling Tom that something was wrong with her and I felt this she was going to change our lives. Five Ultrasounds showed nothing more than a little shorter than average humerus and femur length, which were still within normal ranges, nothing caused anyone concern, we were told she was fine, but that ultrasonography was not an exact diagnostic tool.

Meghan's medical issues were minor compared to friends whose children had many chronic and life threatening defects and conditions. Still we had always had healthy children and everything we went through with Meghan was new to us.

As she received early intervention therapies and grew and changed we also grew, we were calmer, more confident at parenting her, and very much in awe of her strength and her sweet spirit. We adored our sweet angel and we believed that she brought out the best in all of us. We were determined she would have the best life we could give her. Now 6 1/2, her heart spontaneously healed, her trachealmalacia resolved, and she was very healthy.

Meghan is an amazing child. A great mimic, talking better daily, very funny, extremely stubborn, and still with that sweet spirit that brings out the best in all of us. It was because of our love for Meghan that we wanted to adopt two more children with Down syndrome.


Dolores said...

How wonderful for you to write that history. I'm so happy to know that it all worked out and your love for Meghan's has brought two more children with Down syndrome into your family. No better testimony of the joy and love they bring than that!

Alice said...

So beautiful! I was in tears. Thank for sharing so honestly. I am so glad that you were blessed with Meghan. What an inspiration. Her precious life has given hope to two other precious girls.

ellen charge said...

wow thats amazing catn believe the old dr told u to leave her behind stupid stupid

ellen charge said...

wow thats amazing catn believe the old dr told u to leave her behind stupid stupid

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